Nostalgia

Yesterday, I took Karly to see New Moon. She really enjoyed it! She & I both agreed the wolves are just TOO LOUD, but other than that, it was fun.

While we were waiting for the previews to begin, you know how they have ads before the previews now? Well, they had an ad for St. Jude's. All those little bald heads and something about this time of year makes me so sentimental. I was getting teary-eyed, just thinking about how two years ago we didn't know if Karly would ever see 14 - and now she's 15.

Two years ago, we spent Thanksgiving at Children's Hospital in Milwaukee, where Karly had a tumor the size of a grapefruit removed (along with an ovary).  Not too many days after going home we found out that the tumor was cancerous, which totally blew us away.  We spent the better part of the next year getting aggressive treatment for her.  (If you're new to our blog, we have a more detailed post about Karly's cancer journey).

Anyway, back to this weekend.  After the movie, when we got home, this picture popped up on my screensaver slideshow:

When Rubes was a baby, she was such a poor napper. We often let her sleep on the floor of the living room, it seemed to help her if she was near us.  But it was hard to keep Braden & Karly away from her, she was just so sweet and needed to be kissed, even while she was sleeping.

Then, I got to looking at other pictures of the girls together when Karly was sick.

I found this gem - My mom with the girls. Ruby is fascinated by Karly's pajamas, which is very funny because Karly HATED these pjs. She had a Mickey Mouse pair in the same style and she loved those - but she hated "Booty Boob." She had no idea who Betty Boop was and did not care to find out (but sometimes, she had to wear what was clean. And "Booty Boob" still makes me giggle.)

Cancer sucks, but we still had some fun family moments, regardless.  Or maybe we just appreciated the little things more?

Ruby spent a lot of time at the hospital with Karly - Rubes had to go where I went, she was still nursing at the time. AND here she's wearing her signature style of winter '07-'08 - BabyLegs and long-sleeved onesies. PERFECT for hospital life. And she got comments every day on her cute BabyLegs.

But I love how Karly's playing her DS and could care less that Ruby's wiggling & playing right behind her.

Sisters.

Poor Karly, so pale & puffy at that time.
(OOh! And look! The Mickey Mouse pajamas that Karly loved!)


Anyway, not that we ever went to St. Jude's hospital - Karly was treated at Children's Hospital of Wisconsin in Milwaukee and St. Vincent's in Green Bay -  but we are grateful for St. Jude's research.

Max & Ruby

These pictures are awful & fuzzy, I know - but I wanted to share Ruby's new favorite toys: Max & Ruby!

Max & Ruby is a kids' cartoon on Nick Jr. and Ruby (our Ruby!) got these adorable Max & Ruby dolls for her first Christmas. They've been on the shelf in her room, and she asked Daddy to get them down for her the other day.

She's even been taking Max upstairs with her at naptime, which is a first - she's never been one to sleep with toys. Although, she really doesn't let him sleep in her crib; after playing for a few minutes she usually tosses him on the floor. I guess Max keeps her awake at naptime, if he stays in there with her!

Miss Ruby is really into imaginative play lately - her dolls do lots of dancing and playing.  Sometimes her dolls even do sign language, if they're hungry!  She's at such a fun age.

Ruby LOVES Pumpkin Pie

Ruby missed her nap today, since she didn't sleep on the way to Grandma & Grandpa's house. She definitely perked up tonight after dinner - once Daddy started feeding her pumpkin pie!

She not only loved the pie, but she also had an audience, so she totally hammed it up!

These videos are super short (and obnoxiously loud, sorry about that), but Ruby was really putting on a show!

Cute Rubes, Today

So this is what my Rubes was up to today.

After lunch, she shared her juice with her baby.

And after dinner, she destroyed a container of wipes, while mom was right next to her. That's what I get for being on the computer and assuming I knew what she was playing with!

Lots of baby wipes!

Action shot!

She's still playing with the wipes, moving them from pile to pile, throwing them around. Right now, she has them on her feet like socks.

I figure they've got to be thrown out anyway, she might as well have fun with them!

Updated to add:  she threw them all away, all on her own!  Such a good girl.

Braden-ism

Braden says, "I'm easy at that," when he means, "That's easy for me."   Not only that, but the opposite of "easy at" is "hard at."

For example, he'll say things like, "I'm easy at Legos, but Ruby's hard at them."


Another odd Braden-ism is he still says "mine" when he means "my."  Like, "This is mine bedroom."  It's something that's so subtle, it's not always noticable - but it does make him sound vaguely German at times.


These crack me up, and I know he'll outgrown it soon enough ... but for now?  Adorable.

Lily's Calendar Fundraiser

I started a fundraiser on Lily's blog today:

For a donation of $20 or more, we will mail you a magnetic 2010 calendar -You can have Lily's lovely face on your fridge or file cabinet to brighten your day throughout the year! 

Find out more on Lily's blog - 2010 Calendar post.

Blog neglect & New Moon

So, apparently now that I have 2 blogs, I will continue to forget about this one. Just for a while.

Hey! Guess what!? Thursday night, my friend Kirstin & I went to the midnight show of New Moon! (Yes, sometimes I am still under the misguided impression that I am still 15 years old. And can handle being up until 3:00am. Which, I can not. I'm still trying to catch up on sleep.)

Last year, she & I went to Twilight & there was a 12:01 show & a 12:02. So, 2 theaters full of fans.

THIS year - the radio station was playing from the movie theater, and the movie was playing at 12:01 - in 10 of the theaters! CRAZY, right? But wait - there's more! When we left the movie, there was a big line of people - waiting to get into the 3:00am shows! There were 2 shows at 3:00am!  I wonder, did the earlier shows just sell out, or some people couldn't fit midnight into their schedule so 3:00am was a better option?

Also, when we left the theater a guy with a TV camera came over & said, "I'm from Channel 5 news, can I ask you about the movie?" We said no, thanks! & ran off - because, you know, we are ADULTS...

Ruby's Eyes Update

I thought Ruby's eyes were crossing a bit, so I moved up her next appointment from January to today. So, Ruby & I spent the day driving down to Madison & back. I have to say - it's so nice being able to play DVDs for her on long drives when it's just the two of us.

AND - I was totally wrong. Her eyes are awesome & just the same as they were after her surgery (in Aug 08)!

We don't have to go back until May. So, that's something ... I wonder if we'll have Lily home by then? Maybe we could bring them BOTH in May!?

Piano 4 Sale?

Anyone have any experience selling a piano? We keep talking about if we should keep it or not - and now I look at it & think, "How much adoption money could we get for it??"

I feel like we should be selling things - if it were rummage sale season, I might be going wild, trying to raise cash! Sooo... if you've ever been to my house & liked something I have - make me an offer. Just kidding! (Well, mostly kidding...)


AND - if you have anything you'd like to donate to our blog auction, let me know! We have some really cool items already, it should be fun!

Think I can auction off my piano? Hmmm... might be hard to ship!

Brades

Poor little guy - Braden has strep. He had strep last year, and the most stressful part was replacing his toothbrushes! He was so sad we had to throw them all out.

He hasn't been feeling well since Friday - he's been super tired, and achy, and had an upset stomach. Saturday, he began running a low-grade fever, and every now & then he'd throw up - just a little.

Today, Brian noticed weird puffy spots on Braden's legs - so off to the pediatrician's they went. It turns out he has an uncommon virus called HSP (Henoch-Schonlein Purpura or Anaphylactoid Purpura) which is an immune-system reaction, frequently following an infection in the throat. It's not contagious, but it's got him run down & uncomfortable.

That really helps explain why he's been so restless at night & in our bed almost every hour. Poor guy is miserable & exhausted!

They did some blood work & everything else looks good, and this HSP should clear up on its own - in a couple weeks or so. The only thing we can do for the HSP is keep giving him ibuprofen to keep him comfortable. (And an antibiotic for the strep!)

Apparently, unusual viruses & strep are going around - as a secondary to H1N1.  Which he had a couple weeks ago.

The doctor said HSP is uncommon, but they usually see a couple cases of this each year.  Totally not surprising that we'd get something unusual at our house!  (Remember Karly's cancer odds were 1 in 80 million!)

Everything Else

As you can probably imagine, everything else has pretty much been overshadowed by our plans to adopt Lily.

There are just so many new things to worry about - will she stay healthy until we can bring her home? Will the orphanage keep her for us, out of the institution, so we CAN bring her home? Will we pass our home study? How are we going to pay for this!?

Just a few little concerns.

And yet, life goes on here at home...

Braden's been sick all weekend, poor guy. He's just miserable, running a low fever & congested. He hasn't slept well the past few nights, and so therefore, neither Brian & I have slept well either. Last night, even Ruby joined in the party, thinking that 3:30 was time to get up! And eat breakfast!

Lily's Button

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Thanks to RK for making it for me!!

New Adventures

Last week, this beautiful little girl started showing up across the Internet, on many DS blogs:

Little Lera was in danger of being institutionalized. Look at that beautiful little face - she deserves a home and a family. It wasn't her choice to be born in a country where she has no value in society.

I just couldn't look away; I worried about her day & night. She had about a week to find a family. I contacted Reece's Rainbow, and told them if they can't find her a family, let me know.

Brian & I had always talked about adopting SOMEDAY - but we had thought we'd adopt a younger girl - SOMEDAY.

A couple days ago, word went around that a family had committed to Lera. I was so relieved - and a little sad that she wouldn't join our family.  Then, I was THRILLED to find out Lera will be going home to my friend Tracy's home!  Lera's journey will be followed on her new adoption blog!


This experience definitely triggered some interesting conversations between Brian & I ...

We have a house set up for a family of 6. We were prepared to have 4 children, and losing Lydia leaves a permanent empty space in our home.

We know we can never replace Lydia. Her loss will always be with us.

And we're very certain we don't want to have another baby; going through a pregnancy would just be too stressful. Too many reminders of what could go wrong.

And yet, we're missing a daughter, and what would be the best way to honor her memory? By keeping an empty chair at the dinner table, or by bringing home a child who doesn't have a family?


After all the discussions we'd had about little Lera, it suddenly became clear to us that were we to adopt, we'd want an older child - someone between Ruby & Braden in age, a little girl who would otherwise be destined to being sent to an institution and left there with no future. This would keep Ruby our baby, and another little sister for Karly & Braden.

We figured we'd start planning & saving up - and adopt when the time was right.

I told Brian to check out the at-risk girls on the Reece's Rainbow website. There were a few that stood out to us, but one who repeatedly drew our attention.

For one thing, she is a twin. She was given up at birth for having Down syndrome, but her twin was taken home. We lost a twin - and this little girl is a twin without a family.  We lost Lydia, and found a little girl named Lilya.

Most children are sent from their orphanages to the institution at the age of 5 - Lilya turned 5 in August. It's amazing that she's still available for adoption.

So, we can't sit aside and wait and plan. We have to just jump in and go for it - and bring this little girl home. To our home, and make it her home.

Yes, it's expensive - but what is a life worth? It won't be easy, but the best things rarely are.

 This is Lilya - soon to be Lily.  Our daughter Lily.

I hope you'll follow along on our journey on our new blog:  A Home for Lily !

Happy Birthday, RLZ!

Last night, I went out to dinner with a group of moms from our local Down Syndrome Family Network. It was the first time we've done this (well, except for Jennie's going away dinner, but that was a little different) and we had 11 of us total! It was so great to get out & visit with the other moms.

Shortly after I got to the restaurant & as we were waiting for people to arrive - Brian's brother & his wife & 2 kids walked in the door! Yesterday was our niece Rachelle's birthday - sweet 16!!

Happy Birthday, Rachelle!

This picture is an old one, but so sweet - tiny baby Ruby, with her cousin Rachelle.

So?

Did you watch Glee? What did you think??!

Glee - Wednesday Night

Have you been watching Glee? If not - plan on watching it tomorrow. It's an awesome episode, and has a character with Down syndrome (and if you want to check out the show before then, the episodes that already aired are online.) Although even if you've never seen an episode, you should be able to follow along.

Remember last week when Brian got the soundtrack for Glee in the mail? Well, another perk of Brian's job is TV screeners - sometimes we get shows in advance, for review or publicity purposes. A couple weeks ago, we got the screener for Glee, the episode that airs tomorrow, on Wednesday, November 11.

I highly recommend you set your DVRs or tune in for this one!

Medieval Times

Last year at this time, we were in Orlando, staying at the Animal Kingdom Lodge, for Karly's Make-A-Wish trip.

Right near the Give Kids the World Village, there's a Medieval Times. The very same Medieval Times my family went to when we went to Florida for the first time, when I was 11.

My brother & I had great memories of Medieval Times - the cool Koi pond outside (with a little bridge over it!), eating a meal without silverware in a fake castle? Pretty cool for us kids from Michigan.

So when we found out we could go, I signed us up. As a Wish Kid, Karly got in free, and the rest of us could get 1/2 price tickets. Well, it was still pricey (It was over $50 for me & Braden - and that's half-price!!)

We had planned on all of us going, but then Ruby got sick. I spent the day with her in the hotel room while Brian took the kids to Animal Kingdom, so he volunteered to stay with Ru while I took Karly & Braden to Medieval Times.

I was so excited to share something I had loved as a child, with my kids! And then we got there... they still have the koi pond, but it was so dirty. You could almost see that there were fish in there.

When we got inside, everyone had to wait in the main room, which was huge and VERY loud & echo-y. Braden wanted to leave then. See, they want you to come early, hang out & buy their very overpriced drinks & souvenirs.

I'll try to fill you in briefly on the rest of the experience. The show was dusty & loud, but the kids were okay with it - as long as people were riding around on horses. The story-telling parts made them want to leave. The food ... well, let's just say I discovered where my dislike of barbecue began. (We did have a very nice waiter (serf?) who went & got milk for the kids, because all they usually offer is Pepsi & coffee. Good for sobering up those who drank too much before the show, but not so much for the kids.)

Braden ate his garlic toast. And that is all he would even touch - and then he wanted to leave. (The nice waiter packed up Braden's food & I brought it back for Brian at the hotel.)

So, the kids were miserable, it was past their bedtime, and I was running out of cash. So I left a tip for our nice waiter and we crawled out of our bench & got the hell out of there.

Um, could you please PRETEND to be happy?
This was in the lobby, where we got our tickets. We weren't even in the noisy room yet.

Remember those overpriced souvenirs? Yeah. These light-up, retractable swords were my bribe to keep the kids there long enough to go see the show. The kids had fun with them here, in what was a little lobby in the back. I don't think we were really supposed to be in there, but it was quiet.

So. After we left about halfway through, we drove through McDonald's and headed back to the hotel.

The moral of the story: Some fond childhood memories should not be revisited. They're really best left alone.

Denial (aka Happy Birthday Karly!)

Not to make it all about me, but there's really no way possible that I can be the mother of a FIFTEEN-YEAR-OLD, is there? That just can't be true.

How does this:

(with Boppa Bob, at around 3 months old)


turn into this??

Inconceivable!


Happy Birthday, Karly!!

Mail a Card?

There's a 5-yr old boy in Michigan, Noah. He's in last stages of 2-1/2 yr battle with Neuroblastoma Cancer. His family is celebrating Christmas this week & Noah's wish is to get lots of Christmas Cards.

I just read Noah's CarePage, he received over 2600 cards YESTERDAY.

If you'd like to send him a card, please mail to:

Noah Biorkman
1141 Fountain View Circle
South Lyon, MI, 48178

If you put a dollar in the card, it will be donated to the University Of Michigan neuroblastoma research center or the Michigan Make A Wish Chapter.

There's an article in the Detroit online newspaper if you're interested in reading Noah's story.


I know how much getting mail meant to Karly when she was sick & unable to leave the house or see people. So, if you can mail a card - Thank you!

Braden's Latest Work

Remember when we were on a big Perler bead kick? Well, they're baaaaack. The beads have taken over the kitchen once again. This time, Braden is making his own creations.



A spaceship, and a popcorn container (notice the pieces of popcorn stuck to the side?)

Braden made this at school for Halloween - it's a popcorn hand with candy corn fingers! Cute!

Ruby Loves to Dance!

Brian's job has fun perks sometimes. Not only does he sometimes get an early peek at a TV show, but sometimes he gets other items related to TV shows... Yesterday, he got the soundtrack for Glee!

Glee: The Music, Volume 1

Have you been watching Glee? If not - plan on watching it next Wednesday, November 11th. It's an awesome episode, and has a character with Down syndrome (and if you want to check it out before then, the episodes that already aired are online.)

BUT - the real fun of this soundtrack is the music. The kids have been loving it - Ruby's favorite is Gold Digger. Enjoy! (Each of these is less than a minute - and in the 2nd video, you can hear Ru laughing; if you only want to watch one, pick that one!)

Once a year,

I get to update these picture frames!



Karly's 8th grade school picture,
Braden's 5K school picture,
Ruby at 2 years old

(maybe I zoomed in too much on Ruby? Her head is larger than life in this picture! But I love her little face.)


p.s. Grandparents, pictures went out in the mail today :)

TV Grandmas

I was watching TV the other night, and was surprised to see Jasmine Guy playing "Grams." When did she become old enough to be grandmother to a teenager?!? (And, if you must know, it was on Vampire Diaries and yes, I do watch that show.)

That's so messed up - Jasmine Guy was born in 1962, which makes her ... 47? I agree she could be a grandma, but to a high schooler? That's a stretch, isn't it? It was very distracting.

Carry on, then.

Karly's Art Project

When my mom & stepdad were here in early October, they came with us to the Y to watch the kids in their gymnastics classes. As we were leaving, we checked out an art display that was set up all along the hallway.

The next day, Brian took Braden to the Y for swimming lessons. When they were walking past the art projects, they noticed one said, "Karly Zoromski" on it!

Not only had we missed it the day before, Karly didn't even know (or remember?) that art from her school was going to be displayed at the Y!

So that afternoon, after school - we went to the Y on a special trip, just to check out Karly's art project from her Computer Art class.

Karly, her art, & Braden

Karly's Computer Art Project

Ru's New Toy

I know, I know - what were we THINKING?

But, so far, it's been great! Ruby loves it - and so does Braden. Braden's been awesome about hopping off if Ruby climbs on, since we have a one at a time rule.

Ruby's PT (physical therapist) had suggested getting a trampoline to help her learn to jump and just increase her strength overall. She's really been enjoying it, and her favorite is bouncing from one leg to the other - sort of practice jumping. Also, she likes putting balls or weebles on it and spinning them around or making them hop. We've had all kinds of fun making up new games!

This is actually from my dad & stepmom - it is their gift for Ruby for Christmas, and they figured she might as well have it early, since it's going to benefit her.

It's an adult size trampoline, so she should never outgrow it. We just dropped the handle bar as low as it would go, and it's perfect for Ru. (If you live locally - Fleet Farm has a great sale on these in their Christmas sale book).