Ban the Word

Today is the day!

I'm spending the day at school with Braden - but wanted to post something about today before I go. I haven't got anything worked out or written ... so instead, I'm going to send you along. I read a couple blogs this morning, and I love what Jen and Laurie and Tricia wrote.

There's not much more I could add to what they've written - just please don't say the word 'retard' or 'retarded' anymore. Because no matter what you mean when you say it - that word is connected to Ruby.

Plus, Jen, Tricia and Laurie all put up the new, ballsy Special Olympics ads, campaigning against the R-word. They really pack a punch - go check them out.

As promised, an update

Okay, so I guess Brian did a really good job of keeping everyone updated. I really don't have to much new to add!

When Karly went into surgery to have her toenail removed (and the toe cleaned & cultured) they also inserted a PICC line into her arm (like a more permanent IV).

The reason our stay was so long, was the Infectious Disease department had to culture the germs from inside Karly's toe and find out what antibiotic would work best. As Brian said in his lovely Haikus - of course it ended up being something rare!

At first they picked an antibiotic that would need to be given to her every 4 hours, and our doctor asked them to pick again (GOOD THING! or she wouldn't have been able to go to school!) and she's now on IV antibiotics for 30 minutes, every 8 hours. So, three times a day.

The tricky part was she had to have a dose before we left, to make sure she had no allergic reactions. That went well - but then the home nurse had to come & help us get set up (and show us how to do the home doses, which differ from the in-patient type.)

So, if we went home after the first dose, the second was due at midnight. Therefore, we stayed another night - and left after her morning dose on Saturday.

The other wrench in our stay was Karly freaked us all out by having a hot flash on Friday night, so we had to make sure that it wasn't medication-related - turns out it was just a normal ole hot flash. Yay??

Karly's every-two-months oncology clinic visit was on Friday - and she had CT scans, too (which she has every four months). Everything looked great - she's still cancer-free!

Tomorrow, Brian will take her back to the hospital for a post-op check-up on the toe. Then hopefully we can just continue care at home with our regular pediatrician and the home health care nurses.

We're Home!

We're Home!!! And exhausted!! All is well - update soon, I promise!

Haiku Friday: Toe Update

Michelle and Karly
are still in the hospital;
Everything's fine.

Antibiotics
are started; The infection
is identified.

Wouldn't you know it?
We're told Karly's infection's
a rare form of staph.

What are the odds? Well...
Pretty good, when you're talking
about Karly's health.

Right now it sounds like
they'll be home tomorrow.
Can't come soon enough.

For more Haiku posts and rules
to play, visit here.

Toe Watch '09: Post-Surgery Edition

Karly's surgery this morning (to remove her toenail) went very well, and Karly's doing just fine. She had a PICC line put in and she's started on the IV antibiotics. 

We don't really have much more to update than that.  Michelle spent a very long day at the hospital essentially waiting to talk to doctors.  We don't have any clear idea of when Karly will be discharged (we're hoping for Friday), and we should find out more tomorrow.

Attack of the Toe

So we heard back from the orthopedic's office this afternoon, and of the two options that Michelle outlined in her previous post... they're going with both.

The radiologists (looking at Karly's MRI scan) concluded that the bone does appear to be infected, so the plan is to go ahead with the planned surgery tomorrow morning to remove her toenail, and while they're in there they'll take a sample so they can start running a culture to see what kind of infection we're dealing with in there. Then after the surgery Karly will be admitted into hospital and put on IV antibiotics.

We're not sure how long Karly will have to be in the hospital; could be one night, could be two. It all depends on what the culture tells the doctors, since they need to make sure Karly's getting the right antibiotics before she's discharged. Karly will have a PIC line in her arm and Michelle and I will have to give her antibiotics multiple times a day through it. That's nothing scary for us -- we had to give her medicine through her central line during her infections last year, so it won't be anything new. We don't know yet what the dosing schedule will be for the antibiotics, but Karly should still be able to go back to school next week; Michelle or I might just need to stop in during the day if a midday dose is required.

It sounds like Karly will be on the IV antibiotics for 4 to 6 weeks, depending on the drugs she gets, and we'll be getting weekly visits from the local at-home nurses for dressing changes on the PIC line.  That's actually something we're happy to hear -- one of our favorite nurses from Karly's cancer treatment was her main at-home nurse, Nurse Melissa.  She and Karly got along great and she just "got" Karly; there are few nurses (or medical professionals in general) who can instantly make Karly at ease, and Melissa's one of them.  It'll be really good to see her again.

So right now Michelle and Karly are in Milwaukee, checked into a hotel.  They have to be at the hospital at the ungodly hour of 6am tomorrow, so it'll be an extremely long day for them.  I'll be holding down the homefront, taking care of Braden the LEGO Builder and Ruby the Walker/Climber.  

The Toe - an update

I'm waiting to hear from the orthopedic's office today.

They wanted their radiologist to review the MRI of Karly's big toe before they made their next move. No one is really certain yet if the bone is infected - it looks like the infection is near and around the bone, but not in it.

1. If the bone is infected, they'll admit her and begin IV antibiotics.

2. If the bone is NOT infected, they can try other things - and as of now, she's scheduled for surgery in the morning to have the nail removed (EWW!!) and probably the nail bed, too - which means that nail would never grow back.

They're supposed to call us today & let us know what the plan is - and we're still waiting. Maybe I should be packing a bag instead of blogging...

That damn toe

Karly's toe had an MRI on Friday. It appears to be that the bone is infected. After 4 rounds of antibiotics, that toe is still not healthy - and it could be growing different germs in the toe than outside of the toe.

Did you know bones could get infected? We didn't.

ANYWAY - it's inflamed, but there's no bone damage yet. Also, it's contained to the one toe.

Tomorrow (Tuesday) I'm taking Karly to Children's in Milwaukee to see a doc about her toe. Her toe get its very own specialist. Can you believe that!?

They (the docs) say they have to treat this quickly and aggressivly (i.e. lots of antibiotics, probably).


The real bummer here is Karly needs to be at Children's on Friday, too - and at another hospital in Milwaukee on Monday. She'll have three trips to MKE in the next week!

The First Swing of Spring

I love how Ruby swings with a big grin - it's a good thing there weren't any bugs out, or she would've been eating them.


(Braden's sad; he's waiting for a push)

It was so nice out on Saturday, Brian even fired up the grill for burgers! They made the yard smell like summer.

Cute as can be

I think I've FINALLY got Ruby's hair under control; one little ponytail holds the pieces back from her eyes. On the negative side of things, it definitely makes her look older. It's more and more apparent that she's not a baby.


Princess Ruby-Roo

Happy World Down Syndrome Day!

Happy World Down Syndrome Day!!

While Down syndrome awareness month is October - today is WDSD, because of the date!

Today is 3/21 - and people with Down syndrome have 3 of the 21st chromosomes!

The Tonight Show

So, have you heard that President Obama made a Special Olympics joke on The Tonight Show? I read about it on RK's blog - if you haven't heard about it, go read it & come back.

Normally, I would've read about it, fumed a little - and eventually moved on without saying anything. Now that I'm not going to be so damn wishy-washy anymore ... I went to the White House and emailed in a little comment. It was really easy to do - I just googled "The White House" and clicked on "Contact Us."

I wrote a comment really quick, before I could change my mind:

Dear Mr. President,

I am a supporter of yours, and have great faith in your administration.

However, I am bothered by the "Special Olympics" remark you made on the Tonight Show. To a parent of a child with special needs, it wasn't funny. While these types of jokes are unfortunately the norm, they are very hurtful, and frankly it's unfair to crack jokes at the expense of those Americans who do not have a proper forum to fight back. The Special Olympics is an amazing program, and doesn't deserve to be mocked, either. I truly hope you use better judgment in future television appearances.

I have no doubt you love your daughters - and I love mine, even if others do not see them as perfect. I have a daughter with autism and a daughter with Down syndrome, and I would not trade them for the world.

Thank you.

But I have to say - I think Sarah's response is super! If you haven't met this remarkable young lady yet, go visit Sarah's blog. We like her a lot!

Removing the Gag

I self-censor when I blog. Not like I'm a huge potty mouth - I mean topic-wise. I tend to rethink half my posts and then delete them in favor of videos and pictures.

I'm not sure why that is - I think I don't want to offend anyone, and I certainly don't want to draw negative attention toward my blog (or worse, my family). I also don't want to say anything that would stress my parents out or worry them. But then I remember I'm not totally crazy and I'm allowed to have opinions ...

I'm just floundering for direction for my blog, I guess. I'm enjoying the calm - but man, it was definitely easy to blog when we were in the chaos of last year.

Also - in my last post - I didn't link to any other blogs that were talking about "if they could take away DS" because I didn't want to make anyone feel like I was picking on them, or saying they were wrong.

I really do enjoy reading other people's takes on these kinds of topics - because maybe I'm wrong. Shocking, I know - but it's happened before. So, maybe I'm missing some information or key ideas.

Well, except for the whole autism-is-caused-by-vaccines theory. That's just bullshit.

Would you, could you?

A hot topic in the blog world right now is if you could change your child - take away the DS - would you?

I wouldn't. I don't dwell on it, don't wish it were a possibility. Maybe I'll feel otherwise when she's school age and not so protected by family? I'm glad she has a big brother who dotes on her and adores her and will hopefully be in the same school building with her for some of her school years (Yes, Karly loves her, too - but there's no chance of them being together at school.)

In all honestly - I often forget Ruby has DS. Sometimes I look at a picture of her and I'm surprised - "oh, that's right!" I have little DS items & stickers around - I think in a way, they're to remind ME.

I admit I do feel twinges of "what might have been" when Ruby is with other, 'typical' kids her age - she's so petite, and her steps are faltering - much more baby-like than kids who are nearly two.

But.

We have two daughters with DS, and if I had a do-over wish, it would be to have Lydia with us. I feel like Ruby's been shafted - her life-long best friend stolen from her. I would give anything to be able to raise BOTH our daughters with Down syndrome. Not that it would be easy ... but it would still be wonderful.

I have never once thought, "Thank goodness we don't have to do this with TWO babies," while Ruby has therapy. Or doctor appointments, and haircuts, and ear infections, and bloodwork. Last year, while we were living at the hospital with Karly - I thought "Man, we'd be really cramped in here with both babies," but we really would've made it work.

It kills me that we never even got to try.


I know I've said it a thousand times - but losing Lydia really did give us an entirely different perspective on DS. And I respect that every family has their own feelings and struggles and experiences.

The thing is - Ruby is giving us another perspective on DS, too. She's such a character, full of personality, stubborn - and full of unconditional love (I have to say, as I'm writing this, she's 'yelling' at her brother to give her back her toys - she's no push-over, either).

While it takes Ruby longer to learn some things - that's okay, too. We get to celebrate every little moment, and that's transferred to other things, too. We're more aware of how much work our kids put into learning new skills and concepts. Things I took for granted before.

New 'dos

Karly & I got haircuts yesterday; Today we took some self-portraits -

this was her favorite:

Blue Harbor

When Karly finished radiation in July, the hospital in GB offered us a free weekend stay at a nearby resort. The resort allows them to send one family per month - and so we signed up for March 2009.

This place was awesome! It's Blue Harbor Resort in Sheboygan, about an hour from our home. It looked HUGE - but it was really, really well laid out and everything was super accessible.

Not only that, but our suite was the roomiest hotel room I've ever seen! We had a Boathouse Suite which was adorable and Ruby loved having all the room to walk around in. (Although at one point, Braden did ask what was up with all the boats.)

Hello! Welcome to the fort!
How cool is that - the kids beds were in a little fort-like room?!

One of the beds, that Karly's modeling, is designed like a boat! Karly & Braden each had a turn sleeping in the boat bed. In addition to the boat bed, there's also a set of bunk beds.

The kids fort/room also had a TV with Nintendo - and *gasp* we never used it! There really were just so many things to do! (We did use our Free Movie pass and watched Bolt on Saturday night. Cute!)

Braden, in the fun little restaurant where we ate

The fountain in the lobby - Braden loved the brick around it; he ran laps like it was a track.

And the best part? The WATER PARK!
(Brian took these pictures while he & Braden were checking out the arcade - you will not find a swimsuit photo of any of my family in these pictures).

The kiddie area

The large brown pirate ship up top dumped out 1,000 gallons of water every 10 minutes. They warn you with a buzzer first - thank goodness for that!

There were also 4 huge slides and a lazy river - but these smaller slides right here kept Braden's attention for hours on end.

On the way to the lobby, there was a little play area, with Ruby-sized furniture!

See? Ruby-sized!

She was so thrilled, she sat still for 3.2 minutes!

There are also two of these computer desks just above the lobby, for kids to play with. The arcade games were too old for Braden, but this was right up his alley.

and right outside the hotel - Lake Michigan!!
This was taken from the play area with the computer & tiny chairs, not our room. We had a "City View" room, which we all know translates to "Parking Lot View."

After we returned home, I found this site where you can watch Lake Michigan via webcam from the hotel. Why not?

So, while I'm not really a fan of huge crowds OR of water parks, this was pretty awesome. Braden wants to go back for his birthday (he also wants to go to Florida & swim in Nana's pool for his birthday). It was very relaxing, though, because it was low-key, we had no where else to be, no one to be accountable to other than us - totally free! Care free and cost free. Doesn't get much better than that!!

We'd definitely go back - even though it won't be free next time - but I think we'll try to go on a weekday; Saturday was PACKED at the water park.

We're Home!

I bet you didn't even know we were gone! We actually got home yesterday, but then I was busy today (Ruby had OT, and I spent the afternoon in 4K with Braden ... as a volunteer - because Braden reminded me more than once I can't really go to 4K, since I'm 34... Mr. Smarty Pants!)

ANYWAY - as soon as I'm caught up, I want to tell you about our fabulous, fantastic weekend we spent at this beautiful waterpark resort!!

I'm not trying to build up suspense here - I just didn't want too much blog neglect going on!

Because Scrabble is really a partners game

But sometimes? It makes it hard to reach the keyboard. Braden definitely loves helping, although I'd wish he'd stop reading letters out loud...

See Ruby Sign

Some of Ruby's signing - she's mad about Baby Signing Time, as you can see... she's also very into Brian's laptop and the remote control!



We had borrowed Baby Signing Time DVD 1 & 2 from a friend - and after about a month of watching them non-stop, we were THRILLED to find out volumes 3 & 4 had been released! We're so happy for the variety!!

We do have several of the 'original' Signing Time DVDs, but Ruby definitely enjoys the baby ones best.

How long...

can a jar of pickles be in your fridge, before it goes bad? When do you throw them out??

22 Months

So Miss Ruby turned 22 months on Monday. I'm amazed at how fast the time goes by.


Ruby's favorite thing is still Baby Signing Time - she climbs into her chair and start signing "baby" and "signing"


Signing "Signing"
(and Ruby has the cutest little feet in the world! I swear, it's true. She could win an award for cute feet. Also? They rarely stop moving.)

Trying to grab the camera, so I would stop taking pictures and start up the DVD already. Feisty, that girl.

She's so cute when she's ignoring me!

When dust bunnies attack

Last year, we got a new washer and dryer - so easy, even Braden was able to do laundry on his own. The dryer was always slow, but it worked well eventually. Lately, however, it was taking 4 hours to do a load of laundry - and the clothes weren't even coming out warm, they were just mostly not damp.

Brian called the store and the repairman came out on Friday. The dryer works GREAT - but it keeps shutting off. The heater clicks on, and then clicks right off. Why?

Because the duct that vents the dryer outside - was clogged. It was STUFFED with dryer lint. Years and years worth of lint, probably.

So, Saturday we went to visit our friends, and were telling them about our dryer situation. Scott said he could fix it - and sure enough, the next day he showed up with a blower and a shop vac and Operation Suck and Blow commenced.

Seriously, it looked like a rabbit exploded in the backyard, there was so much lint on the ground! It was crazy gross - and now? The dryer works better than it ever has.

We have really awesome friends!

Oh - and while we were visiting on Saturday, at their new home - Ruby LOVED it - they have wood floors everywhere. She had a blast walking around, exploring.

Since Scott & Julie have 4 girls, the kids all had a blast, actually.

Today...

Ruby fell in love with The Wiggles. And? She's wild about Wags the dog.

(I'm just happy to have another option other than Baby Signing Time. I mean, we love those DVDs - but there's only so many times you can listen to the same songs over & over, ya know?)

Not a baby anymore...

These pictures were taken pre-bang trim of last Thursday. I promise - she has much less hair in her eyes now!

Spread the Word

Click on the above graphic for more information.

Barnacles

I always have these great ideas for posts - and then put them off until the kids are in bed. Then? I'm too tired to put a post together.

And I mean GREAT posts, too - like about Shake & Bake, and what a great walker Ruby is, and how Facebook is strange...

and yet? Tonight? Blah.

So - I leave you with this:

Sometimes, Brian has these strange growths ...

Wordless Wednesday

37 Cents

What can you get for .37 at Target?

Well, if you use 12 coupons - this is what I got yesterday!



Safe to assume this was my best shopping trip at Target EVER.

I have a confession to make. I'm obsessed with couponing - it's my hobby. It started last summer when Karly had daily radiation, and every day we drove past a really nice CVS store on the way to the hospital. I had never been to CVS, but always saw lots of great deals (including many items you could get for free) online.

Then, my interest rolled over into my grocery shopping (and double coupon days at our grocery store every Wednesday.)

I didn't share my obsession with you, dear Internet, because I thought people would think I was cheap (or that Karly's cancer was making us go broke...) and really? I've discovered I'm not cheap - I'm frugal!

Guess Who?

Guess who has 10 teeth and just walked across the living room??

This girl!!

See for yourself!

After this video was taken, she also walked from our front door down the hallway to the living room - I think we can officially call her a walker. She gets steadier every day!

Paper Scrabble and Real-Life Scrabble

Years ago, Michelle and I played a lot of board games.  For the most part, Karly has never been into board games (she'd occasionally play but 99% of the time if you ask her if she wants to play a game her answer is a disinterested "No...").  Then came baby Braden and after that baby Ruby, and it became harder and harder to play any kind of game with small pieces.

Michelle and I have been playing a lot of Scrabble on Facebook lately, and this weekend had the idea: "Hey, why don't we get out the actual Scrabble board?"  We could leave it out on the kitchen counter for the weekend, play when we have time.

Braden thought this was a great idea, and became absolutely obsessed with watching us play Scrabble.  "Mom, did you play yet in Real-Life Scrabble?"  (As opposed to Facebook Scrabble on her computer.)  "Dad, what word did you play in Real-Life Scrabble?"

It got to the point where he was dying to play but we were still in the middle of our first game.  So he came up with an idea: he's going to make his own Scrabble game.  He went over to his art supplies and got out paper, scissors, and markers, and went to work.  

 

He called it "Paper Scrabble."  As in: "Dad, it's your turn now in Paper Scrabble."

 

He made nearly everything himself, all to his own design.  The only thing he wanted help with was in creating the letters.  He cut out the squares and had me write the letters on them.  Of course, he wanted to have exact number of letters that a real Scrabble board has... 9 A's, 2 B's, 2 C's, 4 D's, etc.

Later that day, Michelle and I finished our "Real-Life Scrabble" game and Braden asked Mom to play with him.  They both played for a while, then Michelle stepped into the living room with Ruby so she said he could play for her.

Braden would run into the room with updates about what words he played.  He's a beginning reader and knows quite a few small words, but he's gotten really good at sounding out letters.  It's likely due to his Speech and Language class he has at school, where he's been working on specific sounds (like "Sh" and "Z").  So Braden was having fun just putting down letters and trying to sound them out, whether or not they were words.  Like "AAAB" became "A-a-abe!" when Braden would say it.

At one point, Braden ran into the room and said the word he played but we had to have him repeat it, because he couldn't possibly be saying what we thought he was saying.  It turned out he played the letters "FC," so Braden was sounding them out... the "fuh" sound that an "F" makes, followed by a "kuh" or K sound that a "C" makes.  Michelle and I just looked at each other and held back -- he kept repeating it over and over, and we didn't want to draw attention to it, and eventually he moved on and went back to the game in the other room.

That boy is our constant entertainment.

 

The next day, Michelle and I started up a new game, and Braden decided he was playing too -- with his paper letters.  After a while of him taking his "turns," it made for an incredibly confusing game, made all the most distracting with the non-stop questioning - "Did you play a word yet?"