Heart Day

Today is a big day for us...it's heart day!  No it isn't one of those corny Hallmark Days that has been added to the calendar on January 6th.  It is probably only a day that we celebrate here at our house and that those around us who know us and love us remember...but it is a special day for us.

Two years ago...we handed our precious baby girl, not quite 4 months old and not quite 9lbs, over to a nurse, who walked down a very long, white sterile hallway...to a waiting team who fixed her broken heart.  It was probably the hardest day of our lives.  But I will NEVER forget that day.  Yes is was difficult and long and so hard, but the team of doctors and nurses that took care of her that day (and the month that followed) and put our minds at ease and fixed our baby girls heart and then cared for her like there own...THOSE PEOPLE deserve a round of THANKS today.  We only did it once, but they do it all day, every day with hundreds of families each year.  We will be forever grateful to them for the life that they gave to our baby girl...because without this fix...she would not be with us.  And I can't imagine a life without this baby girl!

As I thought about it today...the emotions still run pretty high and are pretty raw and more than a couple times, I was almost in tears and probably squeezed her a little too tight.  But I'm a more grateful person because of this day and when I see that scar peaking out of her shirt, I thank God that she is here with us and that we are so blessed to have her in our lives.

I'm glad that today came around when it did, because my girls have been so sick (Aubrey might have bronchitis now) and I was feeling overwhelmed by all the appointments and keeping everybody's medicine straight and given at the right time and keeping fevers down and snuggling everybody that needed it and well...reflecting on Heart Day, put it all back into perspective for me.  Days like these are EASY in comparison.  And while they aren't fun, I sure would rather be at home in my jammies snuggling my girls than in a hospital away from my family watching my littlest recover from heart surgery again.  Heart Day helps us remember to be thankful...because sometimes we forget.  Heart Day helps us cherish more, love more, hug more and slow down to enjoy the life that we have.

So Happy Heart Day Baby Girl...You have come a long way in two years!  And we love you that much more!

In other exciting news:  Aubrey is moving on to new milestones in the new year.  For two years, (since heart day), we have been using a nebulizer almost every day.  Right now, we are doing 6 treatments a day and holding that thing for her is getting so old.  Today, when I set her on the couch to get ready, she took matters into her own hands!

She pretended to put the medicine in, sat down, put it up to her nose and was trying to turn on the machine herself!  So independent these days!  So I let her and was surprised at how well she did, holding it there herself for almost the whole treatment and readjusting it when it would slip and everything!  (and yes, we watch Baby Signing Time for almost every treatment:)

At Aubrey's 2 year ECI evaluation, our PT mentioned that besides walking independently, the next thing on her checklist of development, was  potty training!  To be honest, she is really interested in potty training and almost every bath begins with taking off a diaper and her peeing on my rug!  I have been dragging my feet a little and today during PT, we jumped the first hurdle and I pulled it out of the box.

She was more than delighted to sit on it and eat snacks.  Up and Down, Up and Down, Up and Down for at least 10 minutes.  Her only problem is that her feet don't touch the floor!  Though she is pretty good about backing up and trying to sit down, I'm thinking we need a shorter potty or a little stool or something if this will ever work.  (I have no hope that she will grow taller, fast enough).  After that, are problem will be trying to find 9-12 month undies (or I'll be putting my sewing skills to use)!  

Too Late?

Am I too late to wish everyone a Merry Christmas?  :)

My kids have been taking turns being sick and needing snuggles and comfort and so everything else gets put on hold:(  I will spare everyone the "sick" pictures that my lovely husband took of us all on the couch the other day...we are a sad bunch.  The sleepless nights, coupled with being 8 months pregnant, are starting to wear thin and my mind is focused on just the necessities of keeping everyone fed, hydrated and clothed:)

Hopefully, this week, we will put it all behind us and have a wonderful new (HEALTHY) year!

Funny Sick Ella:  I do have to share about Ella's sickness, because I don't want to forget and it is just too funny!  She gets REALLY HIGH fevers...105 is pretty typical for her and we know not to freak out too much these days...we know how to handle them.  But she gets so deleriously funny when she is feverish.
*In the middle of the night, she'll start singing "John Jacob Jinglehimmerschmidt" as she is trying to fall asleep!
*Yesterday on the way to the ER, she insisted that we stop at the carwash FIRST, because Dad's car was really dirty!
*After not eating for DAYS...her request when she was finally ready to eat something...Pea Soup, String Cheese, Pickles and Hot Chocolate!

"Light" Reading

Aubrey has really come far in a lot of skills and is working on books and reading currently...

Forget those cardboard, baby books.  She likes the big books, with REAL pages, and the thicker the better.
(if you know her sister Kate and her "flipping page" fetish she had until she learned to read and write, then you will understand where Aubrey is at:)

So it comes as no surprise to me, when I find her sitting under the kitchen table "reading" to herself.  A big book, with lots of pages...doesn't matter that there are no pictures...it is about the page turning...and she is very careful and rarely if ever rips...

Just catching up on some light reading:)

Must be reading the Christmas Story!

From Aubrey

Have you missed my mom's updates lately?

My mommy has been SUPER busy just keeping up with all of us...and our new house...which is looking better, but still looks kind of like this:

My daddy is home for the next TWO WEEKS!!!

So mommy should be able to get ready for Christmas and get the house in order finally...and then catch up on my blog:)

But to catch you up a little, I'll leave you with Thanksgiving.
Balloons are such cheap entertainment...but I LOVE THEM!

We had a wonderful feast, and enjoyed the company of my Auntie Becky all the way from California, and my mommy's cousin Sonja who came up from Austin.

Now off to bed....

Blessed

We are an incredibly blessed family...and more so because we have Aubrey in our midst each day...she has taught us more about ourselves in these last two years than we had learned in our 30 previous years...she has made our hearts grow and our love stretch in incredible ways.  She is our Aubrey and we love her so.

So many children with Down syndrome are never born...I don't know if it is the fear of the of the unknown or the known amount of extra work that that little extra chromosome takes...I don't know...and I don't get it...but it is so sad.

In some parts of the world these kiddos ARE born, but the society they are born into doesn't support them or their families and so these children are sent to orphanages...even if they are loved tremendously.

Olga is one of those children who was lucky enough to be born...but unlucky enough to be in Eastern Europe where she has been left to be an orphan.  Once these children turn 5 they are sent to an institution where the conditions are horrible and many do not live long.  Olga is almost 5.

Reese's Rainbow is an International Down Syndrome Orphan Ministry.  They strive to find homes for  children like Olga.  They set up grant funds to help families adopt these children.  They have touched our lives...because of Aubrey...we might never have known about them if we didn't have Aubrey.  This past year, we have been donating to Jacob's grant fund.  We are proud to announce that he has found his forever family!  And now it is Olga's turn to find her family.  There is no lack of people wanting to adopt, but lack of money.  An international adoption can cost over $25,000.  In this past year, we have read and watched several families adopt internationally from Reese's Rainbow, and it has been such a beautiful journey to watch and be a part of.

Our friend Lily's mom Patti has become a WARRIOR for Olga, because she is almost 5.  She has been blogging about Olga and pleading for donations into her grant fund so that she can find her forever family.  She first wrote about it here:
http://babynumber10.blogspot.com/2010/12/most-important-post-i-have-ever-written.html

We encourage you, in this season of giving, to consider Olga.  Every little bit counts and is helpful.  She is every bit as special as our Aubrey and we hope that she can find a forever family soon.  Donating is fast and easy.  To donate to her fund, go to the bottom of Patti's post for more information.

Cleanliness

It appears that Aubrey has more faith in my abilities to clean and sanitize everything in her world...

And feels that dumping her bag of raisins out on the floor before eating them...

Is a fine activity these days!

Good thing my new cleaning supplies came this week and I will be able to do a better job, now that I know her new habits:)

Glasses Update

It seems like we've had a lot of appointments lately and there is so much updating to do...but first up tonight is the glasses.

Aubrey had a recheck today on her eyes.  When she went 6 weeks ago, the doctor noticed that her optical nerve was enlarged.  So today was the recheck on that.  The doctor wasn't sure if that was "baseline" Aubrey or if there might be other problems going on.  So the recheck was to make sure that it wasn't changing or growing...and it was the same!  That being said...they are going to dig a little deeper.  Our doctor seems lots of kiddos with Down syndrome and while it is not uncommon for them to have a larger optical nerve, in her experience, Aubrey's looked a little different than what she is used to seeing.  She was also a little concerned, after doing some reading up, that there might be a connection between the sensory-neural hearing loss and an enlarged optical nerve.

What does this mean?  Just to be on the safe side, Aubrey will be getting an MRI...which will be sedated.  No hurry, she said, but she just wants to be sure and is 90% sure that it will come back fine.  We will need to check with our cardiologist, who we just happen to be seeing this coming Monday, and check on anestisia requirements and whether they want her to have it done at the cardiac hospital or whether it can be done locally.

It was also decided that her vision wasn't bad enough and she appears to be seeing fine...so the glasses will wait for now.  We go back in ONE YEAR!  Seems like a long time, but I will be monitoring it carefully between now and then and we may go back sooner, or have her checked at the pediatricians anytime that we are there.

She was a happy girls today!

In other "GLASSES" news:

If your child all of the sudden starts watching tv like this:

(always from like 12-24 inches from the screen--yes a whole movie this way:)

Or has an eye that sometimes (or all the time) strays like this:

Especially after an episode of very high fevers...

You should call your eye doctor immediately!

Turns out that Ella has some eye problems too (not related to the fever...but could have been)!  It all boils down to...she needed some glasses pretty bad!  She has a few things going on, but the glasses will not only help her see, but should help with the straying...and if they don't by the time we go back in January, then we will have to do some patching of her good eye to strengthen the bad eye.  THANK GOODNESS Disney got in on the eye patch thing too, because they have some really cool pink princess patches that should make that whole process a lot easier:)

So today, we picked them up and she is very pleased with her new pink glasses.

On the drive home she kept saying the funniest things...like:

Ella:  "Mom, the trees look like they have rainbows on them (colored leaves:)."

Me:  "What do they look like without glasses?"

Ella:  "Just plain."

Ella:  "Mom, the stop lights have big black dots on them too!"

Me:  "What do they look like without glasses?"

Ella:  "Just colors and little gray dots!"

I didn't really expect her to have such a reaction to getting them...but am amazed at what she wasn't seeing before and so grateful that she can see it all now.  She is one smart cookie though and I"m a little afraid of what she will be able to do now that she is seeing everything so clearly!