Tuesday, August 31, 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 order is complete and on its way. All for free! Can't beat it! This one is good through tomorrow 9/1.

Let me know what you get!!

Sunday, August 29, 2010

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 at an indoor playground we’ve reserved. (These are the days I sure miss our old church in C-U with the monstrosity of an indoor playground that was open to the public each day.)  The one here isn’t even 1/2 of the size, but it will be plenty for what we need, and it has a huge netted climbing structure that will be a hit with a bunch of the kids.  There will also be a couple of events just for us all to visit, get to know each other, eat (of course), and for the kids to play.  Some people are going to Cards games, some are hitting a park here or there, a group of us is going to church together on Sunday which is really cool, and there will no doubt be plenty of “after hours” goings on at the hotel.

I’m happy to see it finally arrive, and I’ll probably be happy to see it over, to be honest.  Mostly because I’ve been working on it for a couple months, with my local buddies, and I’m ready to be done with it.  Just from the stressing over managing all the things for so many people. Granted, I took it on myself. This I’m aware of, but I’m ready for a break.  But it won’t be for long… there’s already talk of “next year” among those who couldn’t come this year.  So we’re going to see about setting up something bigger and planning farther ahead for next year.  Hope YOU can join us!

Friday, August 27, 2010

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 It Would Be Without You In It

You Are Perfectly, Wonderfully,
Beautifully Meant To Be

Not happenstance. Not accidental. Perfect…by design.

Meant To Be
(Partial lyrics…)

Long Before You Drew Your First Breath
A Dream Was Coming True

God Wanted to Give A Gift To The World
So He Wrapped It Up In You

Every Step That You've Taken
Every Move That You Make
Is Part Of His Plan

You Were Meant To Be Touching
The Lives That You Touch
And Meant To Be Here 
Making This World So Much More
Than It Would Be Without You In It

You Were Meant to Be Bringing
The Gifts That You Bring
And Singing The Songs 
You've Been Given To Sing

You Are Perfectly, Wonderfully,
Beautifully Meant To Be
You Were Meant To Be

Thursday, August 26, 2010

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.




Saturday, August 21, 2010

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!

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Wednesday, August 18, 2010

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 tasty saltwater in the pool, but she did amazingly well at balance and movement for her first time.
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I just couldn’t get over how well she did.  I stared and kept shaking my head.  She blows me away, this one.  Here’s a short clip of her in action.

Tuesday, August 17, 2010

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 a confidant, probably my best friend, and often a benefactor. As a family, we owe a great deal to her and to Patrick. She is always happy to help with lots of free babysitting, meals out when I need a break, and plenty of shopping for the girls, and sometimes Mommy, too. Our move back to StL two years ago was really held together by her help. She is always ready to help with the girls or around the house in any way needed…even taking off work or rearranging her schedule. Convenient is never a consideration… it’s just about meeting the need. That’s something that I can’t say about very many people at all.

It’s amazing the journey we’ve traveled as sisters, and though this kind of mushy tribute isn’t usually my thing, she deserves some props.

This weekend they have been in Boston for a wedding, and for her birthday, they headed over to Martha’s Vineyard yesterday for a little stay.
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image
Rach, I hope you have a great birthday. The girls are ready to show you their present when you get home. Kinlee’s been sitting here by the computer while I work on this saying, “Rach, Pachich. Home?” because when she’s been asking for you guys, I told her you were on a trip. So she’s been repeating her question several times a day… “Rach, Pachich. Home?” Know that you’re missed!

Taking a cue from my 1989 high school yearbook… LYLAS… love ya like a sis. :o)

Monday, August 16, 2010

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.)

Sunday, August 15, 2010

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 then for the following few hours, but that means I didn’t.  I passed her over to her dad’s side about 5 am, and the two of them slept well for about 3 more hours.  I did get a couple hours in there as well.  Thankfully, Kinlee slept later this morning than her norm, so we didn’t get up til about 830 am.  That is WAY late around here.

Her nap today was better than it has been, though still short, and I’m hopeful that we see more of a ‘normal’ sleeping situation tonight.  Please, goodness!

She’s still strangely fidgety and kind of… I don’t know… obstinate, in a way.  I’m not sure what that’s about, but it is not what we’re used to.  I hope it also lessens as the other issues are addressed.

Right now, the clock on my computer says 10 pm, Kinlee is having trouble going to sleep, keeps having little moments of sad whimpering, but Braska is quiet and snoozing.  I’m hoping all is calm soon so I can get some nice long stretches of sleep tonight.

Tomorrow evening we go to meet Braska’s new teacher for this coming school year, which starts on Wednesday (not sure how much Braska will BE there on Wednesday, though) so I’m glad to get to meet her and start the acquainting process. 

Thank you again for all your support, ideas, input, and especially your prayers.  THIS is why I have a hard time letting go of this blogging addiction I have… it’s all of you, my lifelines, the ones who encourage and support, from nearby and far away.  Blessings to you, my friends.

Saturday, August 14, 2010

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 today if it was possible she was having some kind of drug withdrawal. I admit it sometimes plays out that way, but I can’t imagine what it would be from. She did have fentanyl while under anesthesia, but that’s been over a week ago.

I do feel a little better about the fact that she is not showing signs of throat pain at all. She was in pretty good spirits this morning (after a rough start) and then took a short nap and just now woke very unhappy again.

We’re seeing more happy times, so I’m very thankful for that. Now if we can just figure out this sleeping issue and get her little belly calmed down…

Friday, August 13, 2010

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. Smile

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 has, so in my mind it can't possibly be uninvolved in making her who she is. I'm not in any way willing to risk her changing--her sweetness, her compliant nature, her ability to forgive immediately when wronged, her always-ready hugs and giggles. I know of no child, including her sister, who has this kind of nature (to this degree) who does NOT have DS, and for that reason, I'm not interested in taking that chromosome away.

When we had to deal with the heart issues, I hated it. The heart issues, not the DS. But even then, I wouldn't have changed HER just to avoid the heart surgery. She's had 47 chromosomes since the second she became a being...long before she had a brain or a heart or crooked pinky fingers. So it's more a part of her than the "symptoms" or manifestations, and I'm good with that.

Would I like to help her learn easier? Sure. Would I love it if she would magically eat tomorrow? Of course. But not enough to risk losing any bit of her.

I think she was created precisely like she is, so even when it's frustrating to deal with people, schools, and the world in general, I wouldn't dream of saying to God, "No thanks, I'd like this re-done, please."

She doesn't "happen" to have DS. I believe she was created exactly that way. For me. For my family. And I'll keep her just as she is!

It’s always interesting to hear how others feel about it. Though this is a small and very tight-knit forum, there are those who feel very differently about this. Clearly, we don’t have this option or a “cure”, so I don’t think it’s worth getting worked up about, but it is interesting to hear people’s perspectives on it. Feel free to share if you’d like.

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 about 2 hours. Then was up for a while, just grinding like crazy, but not crying.  Back to bed and sleep.  Then soon she was up again. Daddy held her for a couple hours…and she was just awake.  He put her in bed about 330 am.  At 5am she was up and crying, so I changed her diaper, gave her meds, and rocked her back to sleep.  Then at 730 she was up again and fussing.  She remained clingy and whiny for a while, then I finally had to put her down long enough to get Kinlee up.  That didn’t go over well.

But at about 830, she was calmed down a little and willing to try to watch some Sesame Street.  That allowed me to get Kinlee’s breakfast and start the dishwasher.

Since then, she’s been ok, as long as she is distracted by something. Book, show, sister tackling her. Whatever.

The grinding is still there but not as intense.  It’s kind of back to it’s baseline intensity.  Not the kind that sounds like chips of teeth are coming off each pass.  I don’t know how she can stand it. 

We’re hanging at home.  Library books are overdue, and they’ll just have to be. (Yes, I’ve tried to renew online, but they can’t be.)  The floors are in desperate need of vacuuming, but they will wait. 

We ARE seeing improvement. It’s just slower than impatient-me wants to see. 

And the Bears play preseason tomorrow. So we’re focusing on that as our highlight of the weekend!  If the girls give me a break today, I’ll be prepping our BearsWear for tomorrow, down to the curly bows and matching shoes.  Good thing they both look good in orange and blue!!

Thursday, August 12, 2010

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 constant movement thing that’s so weird with her.  She is usually one to sit still, even if she’s upset, she doesn’t wriggle.  But this last week has shown a very strange fidgeting that just drives me nuts.  She doesn’t just lie sadly on my lap. She has to climb up on my shoulder, then down to cuddle on the left side (shoving one arm behind me) then she wriggles up and flips over, only to climb back up to the shoulder again and start over.  This all happens in less than about 40 seconds.  Over and over.  It’s unnerving.  I usually have to just pin her against me at some point and distract with something to get her to take a deep breath and relax a bit.

I called the ENT office today and the nurse said to go ahead and give her ibuprofen, even though we’re not to the 2-week mark.  She said some kids just don’t respond well to the Tylenol.  Wow.  Thanks for telling me that NOW! So we will do the alternating Tylenol and ibuprofen and hope that helps.  We’ll watch for bleeding, of course, but she’s had no problems so far with that part.  I gave her a dose as soon as I hung up with the nurse.

It comes in waves, and right now she’s calm.  Learning about sound waves on Sid the Science Kid.  We’re going to have to reestablish our TV boundaries after this is over, but for now, if it keeps her distracted and not screaming, we’ll let her enjoy some learning entertainment.    Plus, just ask her how she hears…she’ll tell you “EARS!” Quality.

Wednesday, August 11, 2010

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 out to the store for a quick grocery run.  That’s ONLY because I had some help…

My youngest sister Julia came yesterday, catching a ride with my brother Ryan who was coming to spend a couple days with my other brother Jody. (Keeping up?)   So Julia has been my extra hands to assist with KiKi while I spent all day yesterday dealing with Braska.  It’s helped a great deal.  She’s going home this afternoon.

Braska perked up a little because she got to see her BFF Jack for a bit too.  He came over to have lunch with us after the store run.  The girls both think he is just king of the world.

Now both girls are sleeping, and I’m going to try to conquer the huge challenge that is getting my house back in order from several days of “doing nothing.” Starting with the kitchen.

I’m really hoping that post-nap will be the start of our “she’s on the upswing” celebration.

Thank you to ALL of you who have emailed and commented with info and encouragement.  In my sleep deprivation, I’m so thankful for all the input I can get….better than relying on this brain of mine right now.

Edited…2 hours later… (typing one hand. Sorry.) 
Short nap.  Then another bit while we cuddled. Now awake and fussy again. She is distracting from hurting somewhat with her fave shows. Any little bit, I’ll take.

Tuesday, August 10, 2010

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.
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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 to have to watch.

Monday, August 9, 2010

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)

Sunday, August 8, 2010

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.

(phone post)

Saturday, August 7, 2010

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.  That is ridiculous that I can say that like it’s an accomplishment.

It’s no big deal, I guess, but I need to get my act together.  I’ve totally thrown my good eating plan to the wind.   (And that’s probably part of the problem, now that I think about it.)  You wouldn’t believe that junk I’ve been eating!  I mean, YUM, but seriously…it’s bad.  I have a new membership at the Y that I appreciate greatly, but I need to get up and use it! 

Sure, it’s only been a few days, but I can sink into this kind of thing and live here for a LONG time.  I’ve done it many times. I don’t want to do that. 

Considering the last several days, we’re doing ok.  I’m just impatient with everything, and especially myself.  We’ll get back into the good groove, but right now I feel stuck in the quick sand rut.

Anyone wanna share their favorite pick-me-up?!?  Got a good joke or something?

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 ok, but how excited will they be to see how many people took the time to share in their celebrations!  And if you’re a blogger, PLEASE post this on your blog as well.  (Feel free to copy and paste!)  These wonderful ladies have provided so much insight into their lives and the experiences that have brought them to where they are… I just love seeing Sarah get excited about things and imagine how Braska will be at her age! 

I’m printing a couple pics of the girls to put inside our card and we’re shipping them out.  Can you take a minute to send one too?

JEllen’s House of Fabric
Sarah and Joyce Ely 
5259 Mayfield Road
Lyndhurst, OH 44124

Thanks, Jen… awesome idea! What a heart you have in there, girlfriend!

Friday, August 6, 2010

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 today.  I thought I’d go back to the basic dose of paracetamol during the day, but I don’t want her to be hurting all day.  Decisions…

I’m meeting my parents as they pass through town today to pick up Kinlee (and Belle), so we are probably going to go to M’s parent’s house so that I have extra hands available if both girls are needing me at the same time.  KiKi tends to be extra clingy when she gets back, and she also doesn’t like Braska to get lots of lap time when she’s not included, so this situation will present lots of Mommy overload time.  Thankfully, my mother-in-law is available to tag team with me and take one or the other of the girls when needed.

Braska has a VERY high pain tolerance, so when she indicates pain, I know that it’s seriously hurting.  Her teeth grinding has really escalated the last two days, and I’m assuming that’s a distraction for her as well.  It gets on my last nerve, but I’m trying to deal.

Overall, we’re doing ok, she’s been a real champ so far, and I’m hopeful we’ll survive unscathed. Well, except for the collateral damage to those tonsils and adenoid.  But something’s gotta give, right?

Newsflash…. Before I could click on Publish, she fell apart. So she’s spent the last 15 minutes screaming and thrashing and breaking my heart.  I don’t like things I can’t fix.  She’s had her next dose of meds and some formula, so hopefully she’ll feel better very soon. Oh my.

Thursday, August 5, 2010

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.

Wednesday, August 4, 2010

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 :)

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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.

Tuesday, August 3, 2010

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.

Sunday, August 1, 2010

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 finished basement, which is all M’s domain.

Wow. I still am amazed at how well we do in so much less space than we had before. With only 2.1 in our family back then.
We generally enter our house from the garage. (We are big believers in parking in a garage. I don’t understand people who don’t/can’t park in their garage… that’s what it’s for. )

Entering from the garage, this is the view. The kitchen. It’s a tight fit to get in due to the basement door on the left and the sliding door to the deck on the right, but once you squeeze past into the kitchen, it’s not too bad.

Note the crazy letter-covered fridge. I always swore my fridge would remain tidy. And I still try. But alas. There’s the oft present bib hanging from the cabinet handle, and there’s freshly-microwaved tea on the counter waiting for it’s finishing touches.

This is the view back from the other doorway to the kitchen. The garage door is on the far right end.

The grill is out on the deck. It’s handy. Yet we rarely use it. I could grill out every day. But it really only gets used if we have company. We have a good area outside, though the covered deck is rickety and not safe for the girls. But still… Unfortunately, our neighbor has a bar in his shed—you can also see the shed past the grill—and it is very popular with his friends. VERY popular. So it’s not really the most family-friendly environment. Anyone want to donate a privacy fence?

Here’s some of the deck… this table used to be by our pool back in Champaign. It’s used about once or twice a year now. Kind of sad. Especially since it is our only table and chairs…

The deck isn’t usually this crowded with the little chairs and the slide and a fan, but it was supposed to rain, so I quickly collected everything up under the covered area instead of putting it back where it goes in the garage.

This is the backyard. The deck is to the left of the picture. The girls’ swing and Daddy’s hammock under the big tree. There’s room for a pool on the left side of the yard…but not sure we’ll do that again.

This is the kitchen waiting room. Or that’s what I call it. This is the “eat in” area, except that we don’t eat in here. The girls do. I sometimes eat while I’m feeding them. That’s about it. The little table and chairs is the snack area for the girls.

That little oak thing on the wall in the corner came with the house. I am a little surprised I’ve never taken it down. But I’m more surprised that there’s a stuffed panda bear in a decorative metal basket that is sitting on the shelf—like the bear is in a shiny cage—and it’s been sitting there since we moved in. Really sad.

And the bookshelf to the left is being used as extended pantry/countertop space. The bottom two shelves are covered with a “curtain” of pillowcases. They were cheap. And no, they’ve not been previously slept on.

If you could see the white board calendar clearly you’d see that the calendar part says January 2010.

But wow, how glad I am that we put that hole in the wall. It makes such a huge difference in the way things feel… if you weren’t around 2 years ago, here’s how it used to look.

Here’s the other side of the new opening. We recently rearranged a little, after I cleaned the carpets last week, and now the girls have a new place to climb and watch Mommy work when they’re gated out of the kitchen. This is the view from the front window. Climbing in progress.

On either side of the opening between the living room and the kitchen are about the only pieces of wall art, other than the great big picture blanket you’ll see below, that we have in our entire house. I’ve just not ever managed to get the decorating thing together in the two years we’ve lived here.

On the right side is the cross-stitch that M used to propose to me. (Story here if you’re interested) On the left side is our first professional family picture—and the ONLY one we’ve had, now that I think of it—which was done when Braska was 6 months old.

This is the view from the kitchen into the living room.
The TV is to the left of this picture. The front door is just to the left of the window behind the curtains. The furniture in plaid was given to us by my generous in-laws and the glider/ottoman was a gift for Braska’s nursery from our very dear more-family-than-friend Miss Karen.

The picture blanket is really neat to have. It was a present from M back in March 07 (though I didn’t actually send the pic in to have the blanket made until September 07). The picture is of M and Braska going down a slide at an extended family gathering in Iowa over Labor Day weekend 07. I loved the colors, and the faces, and I knew it was what I wanted to use. It will be Braska’s someday for her to keep.

There used to be a wall full of fireplace and cabinets on that wall where the blanket is. (Reference here if you missed it. Here’s the after.) It is one of the best decisions we made about the changes we did to the house after we moved in. I can’t imagine having to deal with having even less space available if we still had the fireplace there.

Ok, that’s enough for now… this is plenty long. I’ll continue with the rest of the house soon. Grab some cold drinks and appetizers from the kitchen while we take a short intermission.

Anyone wanna join in the fun and share a peek into your house, office, or whatever? I’m always interested! Don’t forget to let me know so I can come take a look.