Sisters

Lilya went to her first birthday party of a friend at school yesterday! It went well; I stayed the whole time, and she seemed to enjoy herself. The other girls were very nice to her, and happy to see her, which made me happy.

I am glad I stayed, with Lil's limited communication and tendency to wander around. She was very well-behaved, but I did redirect her a couple times to stay at least near the group, even if she wasn't interested in the current activity. But, truthfully, I did a lot of standing around and observing.



But, my favorite part of the day was when we came back home. Ruby ran to greet us at the door, "Lalla! Lalla!" and gave Lil a big hug. Then the girls went outside to play. It was really chilly, but they were out there, swinging.  They played, together, for about an hour.

They don't always get along, they don't always want to do the same thing at the same time, but they really amaze us.  They have their own little conversations -- they'll be swinging and Ruby will babble something I don't understand, and yet they'll both stop and trade swings.

Brian & I were watching them from inside, and I took a couple pictures through the window.  It was just such a moment -- they really, truly are sisters.


Lil, pushing Ruby on the double swing

Overview

Things have been busy -- the kids didn't have school on Thursday or Friday.
Braden's had a cough for over a month -- no other symptoms.  It would start to get better, then come back.  Brian brought him in to see Dr B yesterday, and it's some kind of asthma that presents as a cough.  Honestly, I haven't even had time to google it, so I don't know what that means other than for now he's on a medication (Prednisone) for a few days to help.
After his appointment, I took the 4 kids and we went to the Lil & Ruby's physical therapy evaluations at the local hospital.  They haven't had evals for a while, and they don't qualify for PT at school, so I wanted to see how things were going.  No real surprises -- and I'll be able to order new inserts for Lil's shoes (they help give her very flat feet some arch support).  The PT thought she could get the insurance to cover a few visits for the girls so we could practice some things; walking up and down stairs without holding the railing, riding trikes - big, gross motor skills.

This morning, Karly had 2 wisdom teeth removed.  She's doing great!  She's not a complainer, so I've been making sure she takes her ibuprofen on schedule, and icing her cheek.  
It was funny to listen to her chatty on the laughing gas this morning (and with a lot of nervous energy).  I was in the waiting room, but I could hear her very well.  After the doctor gave her the shots, she told the tech, "For some reason, my mouth feels funny," which had me giggling. 
She really did well, though, and I'm proud of her -- she wanted to try it not fully sedated, and I had my concerns, but she was super.  Now I just have to constantly remind her she can't drink from a straw or eat crunchy food for the next week...

Super Ruby!

Ruby is going to be Tigger for Halloween ... despite my attempts to turn her into a gnome.

But the other day after her bath, she tried on Braden's costume ...

Complete with tights (so she can't take off her socks at night),

Footie jammies for a cape (that was all her, putting that on over her shoulders)...

And, of course, the Batman mask!

Together -- it's the newest, tiniest crime-fighter in town:  Bat-Ruby!

Who's that Tigger?

Ruby has a costume party at school today (they don't have school tomorrow or Friday).

So, we just tried on her costume, to make sure it fits.

Not only does it fit, it's beyond adorable!

I showed her this picture on the camera, and she said, "It's ME!"

Then she walked into the living room ....

and "introduced" herself to Lilya!

Seriously!?  I have never seen her do that before.

She was pretty pleased with herself!


Now, I have to figure out how to get the costume off of her to feed her lunch....

Ruby, the Mastermind

People with Down syndrome may take longer to learn some skills, and they may have delayed speech or lower muscle tone -- but by no means are they stupid.

I think they are often underestimated, yet most people with Down syndrome that I know are very adept at finding new ways to get things done.

Here's a visual example ...


Usually, there's a chair at the end of the table.

Today, Ruby walked off with it.  She pushed it across the kitchen (which she often does, to get into cupboards...)

but today, she went clear across the kitchen ... and into the laundry room.

She had a clear goal in mind ... 

The door lock.  See that latch hook lock?  She can't reach it ... but with a chair!  Well, add in a little height and all things are possible!


This is where I intervened.  (Mean Mom that I am!)

Hello, Trimester Three!

I've been meaning to post about this since last week, but what can I say?  Life is busy.  Over a week ago, baby boy crossed the 28 week mark, and we're officially into the third trimester. 
I told Brian, it was like someone flipped a switch.  I'm sleeping worse, I'm feeling "Hunormous" (as Braden says) and stairs are not my friend.   Sometimes, I have to push myself up to get out of a chair.  I don't quite have a waddle yet, but I can definitely feel my balance has shifted and I'm leading with my belly when I walk.   I know it's only going to get more exaggerated from here on out, too.
I had a checkup last week, and in the last month I gained -- nothing.  Brian & I had a good laugh over that, because I'm definitely growing bigger, but I guess it's just all rearranging.  
The plan for now is for increased monitoring (stress tests and ultrasounds) as we near the end.  Because of Lydia, they'll watch the baby closely, as we near full term.  
Also, because we lost Lydia, we won't go late.  So, the first week of January, I'll likely have a c-section (there's always an iota of a chance that the baby will just want to come out early ... but that's not likely.  So, most likely it'll be another c-section).
That's new for me -- in the past, I've always counted on my pregnancies going 42 weeks, and then hoped for shorter.  This time, I know we'll be sometime during week 39 -- which is exciting!  And yet makes me feel completely unprepared at the same time.
I fully expect the next couple months will fly by -- Halloween, Thanksgiving, Christmas, then baby!   Busy, indeed.  Thank goodness I can do most of my Christmas shopping online ... 

Sorry, Nana!

Just want to apologize to my mother for causing her concern -- I didn't post yesterday, AND I wasn't home today when she called!
Last night, the fantastic Popcorn Wendy volunteered her babysitter extraordinaire services, so Brian and I went out to dinner!  Alone!  For possibly the last time, ever... because who's going to be crazy enough to watch FIVE kids for us!? 

Today has been very busy, too -- more about what we've been up to later.  I'm tired!

Whooo?

This hat is just too cute for words!



Thanks to my friend, Sarah, for making this for Baby Zoromski!

Check out Sarah's blog -- she makes & sells all sorts of things, and then donates the proceeds to orphans. 

Ponderings

I love my girls with Down syndrome -- I think that's pretty clear by now.
I've never been in the camp of parents who wish away that extra chromosome -- it's not going to happen, I know that.  I know the girls have extra challenges, and I'm so proud of every accomplishment they make!
However, I wouldn't be opposed to enhancing their lives, and making learning a little easier for them, if that were an option.  Or, "Enhancing brain functions such as cognition and language in individuals with Down syndrome holds the promise to help these individuals conduct a more independent life." as the article below states.
Roche Starts Early Stage Clinical Trial in Down Syndrome

Interesting.  
And, it's exciting to see new research about Down syndrome that isn't focused solely on pre-natal diagnosis and termination.  I think the world is definitely a better place, with individuals with Down syndrome in it.  I know my life is better, for it -- and I hope my girls have every opportunity to lead a happy, productive, healthy life.

Local People: A Comedy Event!

Comedy Event Benefiting  Down Syndrome Association of WI -  Fox Cities Thursday, October 27th Seating Begins at 6:30 pm Comedy Quarter 1575 Plaza Drive, Neenah Click HERE for directions

Enjoy a night out and support Down syndrome awareness!  This event is not only for DSAW-Fox Cities families. Tell your relatives, friends and neighbors who may be looking for a way to support Down syndrome for Down syndrome awareness month or may just be in need of a fun night out!  Feel free to forward this email on to others! Tickets should be purchased in advance online by clicking on the link below or simply visiting www.comedyquarter.com.  Show features Spanky Brown and is rated PG-18.  Visit website for additional details.   Buy Tickets Now! 100% of the proceeds from ticket sales benefit DSAW-Fox Cities!

Horse Therapy

I know I've blogged about the girls going to see the horses last summer, but thought I'd bring it up again for DS Awareness month.  When you have kiddos with special needs, sometimes therapy comes in all sorts of fun forms!

We started equine therapy for the girls this past summer.  They were riding at the same time, with the help of volunteers (i.e. they were safe, I got to sit on the sidelines and watch & cheer).


Lil was pretty nervous the first few times (she was glued to her helper the first time she was on the horse) but she eventually warmed up.

Then, her horse started coughing.  That freaked her out, and her next couple sessions were pretty rough.  We took a hiatus when we were on vacation and school was starting ... and we're back at it.

Now, the girls ride one after another for the most part (because they don't have as many volunteers as they did in the summer, for one thing).  We've found it is immensely helpful for Lilya to watch Ruby ride for a little bit.  That helps her calm down, and look forward to her turn.

Last week, we showed up and Lilya asked for her "hat" right away.  She was ready!

They also wear safety belts, to make it safer to hold onto them.

Rubes has no fear!  She's always ready to walk on" as they tell the horses.

Last week, Rar-Rar came with to watch!  He was very well behaved.

Near the end of Ruby's turn, Lil was just starting out ... they were playing a little game of catch together

Ruby & Rar-Rar, watching Lilya ride

Lil did great!  No fear at all -- and she didn't try to quit early (by saying/signing "All done!")

This is not only great fun for the girls, but it's very good for building core strength (which Lil especially needs).  They are TIRED after they ride -- it's definitely a workout!

Weekend Recap

I never really blogged about it, but Brian was gone all last week.  Much like I don't like to blog about when we're going on vacation until we get back, I just didn't want to announce to the world at large that the kids & I were home alone.
Anyway, Brian was gone for work all week.  It was a long week for all of us, but we survived!  As the week went on, the little girls were clearly missing Brian more, and it was hard for them to understand.  Brian had a wonderful reception when he returned on Friday -- he had two little barnacles clinging to him for the rest of the evening.

Braden's popcorn sale officially ended today -- he tripled his goal!  He'll find out in a couple weeks if he's a top seller in his unit (the number one prize is 3 sets of Star Wars Legos, so he was very motivated).

Karly has a consult with the dental surgeon this week.  She'll have to have her wisdom teeth out -- she only has three, which  is better than needing to have four removed!

And... that's about all I have for tonight!

Ruby's Family

Ruby brought home this picture of her family, from school...


All the 4K kids made them, I got to see them hanging on the wall when I went to Ruby's class last month.

Ruby was showing it to Daddy, but it was hard for her to hold it -- I think it's almost as tall as she is!

Our Family!
Braden, Lilya, Karly, Ruby, Lilo the cat, baby boy, Dad & Mom


Good work, Ruby!

Wanted: Learn Through Music

This is Lil's absolute favorite, favorite toy.

We have several of the cartridges for it, and two of the Learn Through Music machines to play them.

Unfortunately, they are BOTH broken.  And, of course, no longer made or available in stores.



If you have one to get rid of -- please contact me!
I'll pay for shipping, and be eternally grateful.

Party Etiquette

I'm not a big birthday party person.  Like I said recently, Braden just had his first "with friends" party -- and he's 8.  I think Karly was around the same age when we had her first school friends party.

So, this past week, Lilya has been invited to 2 birthday parties, and Ruby to a Halloween party.  Which to me, is really exciting for them!

I'm sure it's an "invite the whole class" thing, though ... and I worry.   Do the parents know the girls have Down syndrome?  Will they think I'm odd, if I stay?  Probably not -- I mean, these are pre-kindergartners and kindergartners.  It's not like it's a junior high party.   

And, if they don't already know the girls have DS, will they regret inviting them once they find out?
I think we can actually only make it to one of these 3 parties this month, because we have other things going on ... but still.  I am so excited for them to be included, yet so nervous for how it's going to play out.


My plan is to make sure the parents know when I RSVP, like, "I'm not sure if you've met Lilya yet, but she does have Down syndrome.  Because she does have some communication struggles, I planned on staying with her for the party -- is that okay with you?"   Something like that.  

Is that the best plan?  I don't know.  I'd rather give them some time to process that she has Down syndrome, maybe ask their child about her, than just show up at their door and have them too polite to ask me anything.  I don't mind that the topic is out there (and a note about a "friend in class has Down syndrome" did go home to Lilya's classmates).  We are not ashamed or embarrassed that the girls have Down syndrome, and we're certainly not afraid to talk about it ..... and yet.  They're so much MORE than just little girls with Down syndrome.  I don't want people to have preconceived notions, either.
Parenting is hard.

Advice?  Suggestions? 

Ruby's Number One Fan!

Both girls actually love to watch themselves in the mirror...

Lilya's Cardiology Update

When we committed to Lilya, way back in fall 2009, we knew she had a heart defect.  You can read her full bio here, but the heart defect was listed as an AV canal defect, well-balanced.  We had questions -- lots of them!  and found a pediatric cardiologist who would answer our questions via email.  We were warned -- there was a chance she was unoperable.  For her to have a heart defect for 5 years, left untreated, could have potentially damaged her lungs.

Heart issues were new for us, but we really felt like this was our daughter and we should do our best to bring her home and get her that surgery, if it was possible.  Now, I admit, I was not looking forward to getting home with a new child and then going through a major surgery for her (scary for her, more time away from the other kids for us), but we were committed to going forward.

And besides, I followed along when Emma Cornish came home in 2008, was said to be inoperable ... and then another doctor successfully repaired her heart.  

Then, shortly after we committed to Lilya -- we got an update.  She had her heart surgery!  Our poor dolly went through major surgery, alone, without a mom or dad to comfort her -- but she now had a stronger heart.

Today was our third visit to the cardiologist, and I like her very much (she's the same one who answered my emails back in 2009).

Our first visit was in August 2010:

• Cardiologist - we knew Lil had an ASD (hole) that was repaired. She apparently also had a VSD (hole in a different place) that healed on its own, probably when she was a baby. We didn't know she had a valve repaired (stitched) during her surgery, and this mitral valve has a bit of back flow.
  
  What does that mean? For now, she looks good. She had an EKG & an Echo (she's such a trooper & good listener!) The cardiologist started her on a low dose blood pressure med, to help the blood flow easier, with the goal of preserving the life of that valve. Otherwise, in the future (5, 10, 20 years) she may need another operation to repair or replace that valve.

We then put Lil on the blood pressure medication, and went back after 6 months, and continued our same course.

Today, there was a mixup in the doctor's office, and they forgot about us.  So, we waited and waited and waited some more, and then finally -- Lilya had an EKG & an Echo.

When we saw the cardiologist, she completely blew me away.  She said the back flow of the mitral valve is virtually non-existent.  She can't even hear a murmur when she listens to her.  She thinks with Lil's growth, time since surgery, better nutrition and overall health -- we should take her off the medication.  She wants to give her a chance to prove that her heart is doing what it's doing, on its own.  

AMAZING!  

We'll follow up in a year (or earlier if any problems should appear) ... but, our girl has a wonderfully healthy heart!

A Girl and Her Dog

Ruby loves dogs lately.  From cartoon dogs (Clifford the Big Red Dog and Martha Speaks are big favorites) to live dogs, they always bring a smile to her face.  In the last few weeks, she's taken to one of her stuffed animal dogs... who she calls "Rar-Rar". 

Ruby does everything with Rar-Rar...

They watch TV together,

Play in the office,

Go upstairs and downstairs,

And go for walks outside.

Rar-Rar even watches Ruby swing.

Michelle and I aren't big dog people, but we love Rar-Rar.  He eats almost nothing, never makes a mess and doesn't complain when he doesn't get to go outside.  He can get pretty yappy at times, but never in the middle of the night.  He's really the perfect pet.  

Raking in Shorts

You can definitely tell it's fall in Wisconsin... kids are in school, football season is in full swing, Cub Scouts like Braden are out selling popcorn, leaves are falling and it's 80 degrees outside.  Wait -- what?  It's 80 degrees out?  Yes, this weekend it was shorts weather... and the trees here are just as confused as us.


While some trees have decided it's definitely fall (we did get a frost one day, over a week ago), changed colors and are almost completely done dropping their leaves.  Others have taken a look around and said, "Seriously, guys?  It's 80 degrees out.  I'm not changing colors yet."
About the half the trees in our yard fell into the "It's fall now!" group, so Lily and Ruby helped me rake up some leaves this weekend.  While wearing shorts and t-shirts.  It's the first time I can ever remember not only raking in shorts but actually thinking, "Man, it's hot out," while raking leaves.

Since this picture was taken (on Saturday), the tree on the left now has almost no leaves left.  The tree on the right still hasn't changed colors.  The little girl?  Still adorable, even without a rake.

The rake may be upside down, but it doesn't stop her enthusiasm.

This is a much more Ruby-sized rake, but soon after this she gave up on raking and moved on to the fun part...

... jumping in leaf piles!

Lilya joined in as well, a little hesitantly at first.

Ruby gets ready to take a running jump into the leaves while Lilya checks out a rake.

Ruby's signing "again" in this picture.

They played in these leaf piles for hours and hours on Saturday and Sunday.  They were both exhausted... Ruby and Lily even slept in until 8:00 this morning, which is unheard of -- normally they wake up sometime after 6:00, almost never later than 7:00.

80-degree weather in October?  The girls sleeping in until 8:00?  What's next?  (Did I just jinx it by asking that?)