I thought I would have to teach my daughter about the world; turns out I have to teach the world about her. They see a girl who doesn't speak,
I see a miracle who doesn't need words.

Wednesday, December 29, 2010

Merry Christmas!

I hope everyone had a very Merry Christmas!  We definitely did!! We had a wonderful Christmas Eve celebration at my parent's house with my brother and sister-in-law, my sister and brother-in-law, his mom and dad and my nieces - and what a feast my parents prepared!  The kids had so much fun being together and opening their presents.  It was a late night for Alex and by the time we got home it was after 10:00, way past her 7:00 bedtime.  She was up at 3:50 in the morning and was squealing so loud she woke the entire house up - of course Zach came running into our room and wanted to know if Santa came and if it was time to open presents.  Ugh!  No, Zach, please, please go back to bed!  Thankfully he did, and I actually had to wake him up at 8:30 to tell him Santa had come.  I took him downstairs and he was so excited to see all the presents under the tree....BUT....he didn't want to open anything right away, he wanted to wait for Aaron to finish getting Alex ready and she was downstairs with him.  When they came downstairs, he STILL didn't want to open anything because he wanted to help Alex open her presents first.  I thought that was so sweet and kind of him.  No wonder Santa had him on the Nice List! :)

Christmas day we had a great brunch at our house with my parents and my girlfriend Dana.  And, IT SNOWED - on Christmas!  It was an awesome day being together and enjoying all the excitement in the house.  

Here's a little video from our Christmas Eve and Christmas Day...only 359 days until we get to do it all over again :)


video

Saturday, December 18, 2010

Where's Your Nose?!?

I realize that Alex is 9 and that this is a milestone most children accomplish before their first birthday, but this IS a MILESTONE!  I will take it at any age and be just as excited!!! 



video

Tuesday, December 14, 2010

Yellow Belt!

Zach got his yellow belt in Karate this Saturday!

He's worked really hard to earn it and we're very proud of him!!







Friday, December 10, 2010

Wow!

Back in August I posted about Alex and a the potential of her using an eye gaze system to communicate.  Yesterday her speech therapist FINALLY got the loaner system for Alex to use.  And.......she did AWESOME!!!!!!!!!!!!!!!!!!!!!!  She calibrated the machine, with her OWN eyes on the VERY FIRST try, and for the entire hour that we were at therapy and on the machine she did EXACTLY what she needed to!!!  I can't even begin to express how exciting this is!  She asked for specific toys using her eyes, followed certain commands, and even told us FOUR consecutive times that she was feeling good!!  It was so incredibly awesome to see her using the machine...her therapist kept saying, this is "freakin" awesome!  She took pictures and video of what Alex was doing, and even admitted that she really didn't think Alex was capable of using the equipment.  I even think at one point she shed a tear :)  I KNEW all along that Alex could do it!  SOOOOOOOOOOOOOOO exciting.  I can't wait for her next appointment so I can be prepared with my camera!!  Way to go Beans!!! (By the way, she KNEW she was doing an awesome job!  She kept smiling and laughing every time she did what we wanted her to!)  We still have a LONG way to go to justify this equipment, but what a great way to start off!!!!

Wednesday, December 8, 2010

Here We Go Again....

Without going into detail, we are "nurseless" again.  I am so frustrated.  It is so hard having random strangers come into your home, have your children get attached, have them get to know details about you and your routines that normal people wouldn't know about you only to have them be gone in a matter of weeks.  I'm EXTREMELY frustrated for the reasons this last nurse didn't work out and I'm so frustrated that someone can come into our lives, see what we go through on a daily basis and basically just have no regard for anyone but themselves.  We so often think that because Alex cannot communicate that she doesn't understand what's going on, but I can tell you that she certainly does.  She was very upset when we Audretta left - she even went on a mini food strike.  When we discussed the newest nurse leaving she cried, and I mean cried.  It has an effect on Zach too - he talks about it, and he asks LOTS of questions.  I don't want a revolving door of people in and out of our lives, I don't want everyone to get attached and then have to deal with that person leaving in a short time frame.  Nursing is "supposed" to make our lives easier, but it honestly makes things very complicated and difficult.  I'm praying we find someone who will be a permanent fixture for a while - someone who will love their job and love and care for Alex -- I'm not sure if it's a pipe dream, but I can hope.

Sorry for the rant - like I said - I'm FRUSTRATED!

Sunday, November 28, 2010

Happy Thanksgiving!

I'm thankful for my amazing husband.
I'm thankful for my two beautiful children.
I'm thank for my incredibly loving and supportive family.
I'm thankful for my wonderful friends.
I'm thankful for my job, for a roof over my head and food on my table.
I'm thankful for all of the blessings in my life.

We had a great Thanksgiving at my sister's house with lots of friends and family. Thanks Dana and Shane for hosting and the delicious spread!!



Oh, and I'm so thankful for that amazing husband who gave me an early Christmas present on Thanksgiving day..a new camera!!!



Dana and Shane

My nieces Cameron and MaryGrace

Sisters

Me and Dana

Yep...she loves me!



Sweet Girl

Cameron is so great with Alex

Beans and her Papa - love this picture

What's Thanksgiving without a little football?  Jonah and Zach

My Mom and Mother-in-law

Happy Birthday Papa!
Alex showing Jennifer how thankful she is for her!

Tuesday, November 23, 2010

HAPPY BIRTHDAY!!

Can it really be that Allie Bean the Beauty Queen is 9 years old today? 



It just doesn't seem possible.  Everyone tells you to enjoy your kids because time flies - and you think, yeah, yeah....but oh it really does! 

What a journey it's been so far.  Yes, it's really hard at times, but I'm so blessed and lucky to be Alex's mom.  I love my job, I love my kids.

I think Alex has had a  GREAT time celebrating.  She LOVES when people sing Happy Birthday to her.  She smiles and gets all excited.  We had a party for her on Sunday and I truly believe she knew exactly what was going on, what the day was all about and loved that everyone who loves her was there just for her.  This morning Aaron and I went to her school with cupcakes and tonight we'll have another celebration for her. 


The Birthday Princess and her Aunt Dana


MeMe and Papa


Very excited about all of her presents!

 The four wonderful women we are so lucky to have in our lives that take the very best care of her. 
Jennifer, Ronica Audretta and Dawn



 These were from her leaving all excited for school this morning.
  

Happy Birthday sweet girl - you are so loved.

Thursday, November 18, 2010

Happy Veterans Day - A Little Late!

Last week Zach's school had a ceremony to honor veterans, and all of the first graders sang a number of songs - Zach did a great job!  Each veteran that attended was acknowledged by name.  The school did a fantastic job.  My dad came to represent the Army and was acknowledged for the time he served - Thank you, Dad.  Aaron, unfortunately, couldn't be there to represent the Marines.  To all the veterans who have served - thank you.


Heroes
In war, there are lives risked and lives taken
Men and women giving their best to defend what they love

They defend their country
Their honor
Their people

Some call them soldiers
Others call them heroes

Our veterans have risked their lives for us
They have lived through hell and fought with honor
Many have killed
And regret doing so

For every life, there is a soul
For every soul, there is a life
For those who have died, we show great appreciation and remembrance
For those who live, along with them live the horrific memories of battle
Some, memories of defeat
Some, memories of victory

Our veterans were more than soldiers
They were, and still are heroes

Tuesday, November 16, 2010

New Friends

I'm so happy to report that we have a new nurse!  I never in my wildest dreams would have thought we would have interviewed and found someone in less than a week.  I switched agencies and I know it's only been a little over a week, but I'm so glad I did.  Her name is Dawn and she and Alex really seem to connect.  From what I have seen (she spends most of her day at school with Alex), she is very kind and loving.  I knew I liked her about 5 minutes after the interview started.  She was the only person to come in and actually take notes, asked really good questions about Alex, her care, her meds, etc.  Alex wasn't feeling good on the day she interviewed and was up taking a nap.  When I brought her upstairs to meet Alex, she sat on the edge of bed and talked so softly to her while smoothing her hair the whole time.  Very tender.   Typically, anytime someone new feeds Alex she gives them her own little test.  She laughs, spits her food out, pulls at her hair, etc.  I SWEAR she does it to test the "newbies" patience and to see how they are going to respond to her.  Dawn, so far, is the only person Alex HASN'T tested.  I guess that's a good sign!

I'm also happy to report that we've had someone come in to fill Miss Jennifer's spot (I say fill because there is no replacing Jennifer!).  Ronica started a little over a month ago and she helps out in the evenings.  She's wonderful with Alex too and Alex really likes her.  Jennifer visits once a week so Alex is loving all the one on one attention she gets...Zach commented the other day that it's not "fair" that Sissy has so many people that come see her and he wants his own person too.  Oh the joys of  family dynamics when you have a special needs kid!

Thanks everyone for your prayers and good thoughts.  We feel really lucky and blessed to have two new wonderful additions to our family.

Wednesday, November 10, 2010

My Handsome Little Man

We are two for two on the Fall school pictures this year.  I'm so happy the schools changed to a new company - huge shout out to Strawbridge Studios...I think they're so much better!

I cannot believe how grown up Zach looks. 


So in love... :)

Monday, November 8, 2010

A BIG Loss

This past Friday Alexandra's nurse, who has been with us for the past six years said good-bye to us.  I cannot begin to tell you what a devastating loss this is to all of us - most importantly Alex.  I have cried and cried and cried over this.  It has forced me to think even harder about Alex's future, the long-term care she is always going to need and those thoughts are extremely overwhelming and saddening.   I knew the day would eventually come that Audretta would have to move on, and I knew we would all be sad, but I could never have dreamed of just how emotional I would be.  I can barely talk about it without crying.  I like to think of myself as a pretty upbeat person, but lately I'm so not that person.  My heart hurts so bad for Alex.  Alex has no clue that Audretta was "hired" to care for her.  From the time she was 3, all Alex knows is that Audretta has always been there to comfort her when she's sad, feed her when she is hungry, change her when she's wet, sing silly songs with her, take her for walks, read books to her, play with her, always there to take her off the school bus, always at school with her, always at therapy with her - for all intensive purposes, another mother for her.  I have no idea where we are going to go from here. I have no idea what the future is going to hold as far as care and help for Alex.  I do know that God has brought the most amazing people into our lives because of Alex.  We have been blessed in so so many ways since Alex came along and I can only have faith that He has a plan.  It still stinks though and I'm still just so sad.   

Wednesday, November 3, 2010

Camping - And a Ton of Pictures!

Two weeks ago my girlfriends and I took the kids camping to Loft Mountain in Shenandoah National Park.  Just the girls, no men - have to say I was a bit scared of how the whole tent set up would go, but we did just fine.....ok, so maybe my best friend Dana set it up just fine! 


I really wanted to take Alex with us, but the night before it was 36 degrees and Aaron put his foot down and wouldn't let me take her.  Unfortunately for her, we had fabulous weather the next night and that made me feel even worse that she wasn't with us. 

Zach had a fabulous time - he loved being with all the kids, going on hikes, playing football, cooking on the campfire, roasting marsh mellows and sleeping in the tent.

Zach and Jonah


The kids being silly around the campfire

Best Friends...and a silly boy!

Love this picture of Zach

Me, Jonah (the camera ham) and Zach at the campfire

Katie and Sydney

Me and my sweet boy!
 
My friend Katie's son is an amazing drummer and he had brought a little drum with him.  All the kids sat around and watched Brenden play and took turns...it was pretty awesome how well all 7 of the kids got along.


Of course, what's a camping trip without the marsh mellows?!?







Sunday morning Zach and I had woken up before anyone else and Zach said "Mom, I want to show you something really beautiful -- not as beautiful as you, but close" - he's so good to me! :)  He wanted to take me on a hiking trail he and the kids had been on the day before.  So we watched a beautiful sunrise...


And headed off for our hike.   


We really picked a great weekend to go - the trees were changing colors and it really was beautiful.

We got back to the campsite and the kids played more football and goofed off for a while. 

We never did get all 7 kids in one picture.

We ended the trip with a stop at a scenic overlook on our way out of the park.




That is not a bow on Katie's head, it is a wasp that no one told her was sitting on her head!!!

It was a really great little trip with lots of laughs, awesome kids and amazing friends.

Monday, November 1, 2010

Happy Halloween!

I have so much blogging to catch up on, but for now, I'll just post the pictures from Halloween.

My little candy corn witch and her Daddy...

Grandma and Grandpa were in town visiting from Rochester and Grandpa made sure that he took Alex to all the houses so that she got her fair share of candy!


Sorry the pictures are a little "grainy".  My camera broke, which I'm so not happy about considering it's fairly new and I LOVE to take pictures!

Zach was Harry Potter and he made out like a bandit - he could barely carry his bag back to the house it was so heavy!

That's all for now - hopefully I'll have time to blog and catch up in the next few days.

Wednesday, October 27, 2010

My Beautiful Girl

Of course I am a bit biased, but we got her school picture and I just love it.  She melts my heart every time I look at it.