Saturday, June 23, 2012
We've been preparing for the Congenital Heart Walk of Pittsburgh. The walk was today and over 500 walkers came and raised over $55,000.00 for Congenital Heart defects. Our Mended Little Hearts team raised over $10,000.00 and had over 100 walkers! (AMAZING!)
Why we walk:
CHD (Congenital Heart Defect) is the #1 Birth Defect.
It affects 35,000-40,000 babies born every year
And CHD is Grossly under funded. (Advocates like the Adult Congenital Heart Association and Mended Little Hearts are trying to change this!)
The Children's Heart Foundation provides research grants to the brilliant minds out there who are finding answers and cures. Money that is critical to their success. We need more research and more research money to save more lives!
Advocating and Raising Awareness is vital to CHD's! Again....Raising awareness and advocating saves lives! And raises more money...which saves more lives!
Today was all about raising money for those 3 National organizations. EVERY SINGLE DOLLAR goes straight to CHD's. Every dollar raised will directly impact our CHD Warriors.
My Clan with Dr. Stephen Cook
Did you know that as children with CHD's grow into adulthood it's imperative they are followed with their Cardiac care by a doctor who specializes in Adult Congenital Heart Defects? Their hearts are NOT like "typical hearts" and a typical Cardiac doctor won't be able to provide the best care! Dr. Cook is the Children's Hospital of Pittsburgh's Adult Congenital Heart Specialist.
My Heart Warrior, Little Baer (Who btw....looks pretty darn irritated at me in this picture. haha)
He was born with an AtrialVentricular Septal Defect. (A hole in the Center wall (Septum) of the heart which encompasses all 4 chambers.) His repair was done at 3 months old. He still has a subaortic membrane, which is causing subaortic stenosis. He will require another open heart surgery, at some point. 6 mths? 1 year? 2 years? The timeline is unknown. A lot of the CHD world is unknown. It's all about waiting and patience. And faith and prayer.
My Big girls:
Always there to support us in our journey is Goldilocks and her girlfriend (Which...btw has no name. she needs a name....I have the 3 baers and momma baer and papa baer and Goldilocks. She can't be the big bad wolf..cause she's just to sweet. haha) They donated an autographed Penguins hockey puck of theirs to raise money for the walk! How cool is that?
My dear friend Patty. She runs the Children's Heart Foundation, PA Chapter.
I must say, Patty has been an amazing friend. I specifically remember her reaching out to me during a hard period for me and asking if I was ok, only because she knew me and knew I wasn't alright at the time. I love her! Her dedication inspires me! I wish we didn't live on the opposite ends of a huge state. :)
Laura and I! Laura is a Cardiac Social worker and is one of my very first contacts with Children's Hospital. She has been such a supporter and friend through our process of building our group here. We laughed and shared how it was so nice to see each other "out of work" when we had some time to chat.
Me and "She who is yet to be named" acting silly!
Oh Baby Baer is finally growing some hair. Now if we could control it!
Mama Baer and Goldilocks. I love this girl! she really has become an amazing woman and I'm so proud of her!
She has had a lot on her shoulders as a big sister through this journey. She has shared the CICU waiting room with me, stayed at the hospital with me, helped me hold her baby brother while the nurse.s poked and prodded him. (Even though she HATES blood and drool haha) And even braves all the events with us (Even though there are always clowns.) She learned all about the medical stuff she needed to know (And a lot she didn't)
CHD's don't affect just one person. for every little heart that is born with a CHD there are moms, dads, sisters, brothers, grandparents, friends, and so many others.
All of these people came out today to support, donate, walk, raise awareness, and enjoy their day with friends. Families they have met along the way who are just like their family now.
We are all out there trying to do what we can to Save lives!
When we chartered our group in October 2009, I had no idea where it would lead us. We really had 10 people....who made up EVERY.SINGLE.PERSON we knew that knew about CHD's. And finding those 10 people was tough. Now we are a part of this massive "family" of hearts.
To find out Information on the 3 AWESOME organizations you can go here:
and a few others from today that you might be interested in!
Our super great friend Danielle over at Jameson's Army
Sunday, June 10, 2012
Here's the thing. I think I have this mom thing figured out. Ya know....I do all the right things, I feed them well, making sure they eat their vegetables and fruits. I make sure that I am on top of all the therapies and doctors and appts. I make sure they have all the toys and games and gadgets they think they need. Lots of awesome clothes. I'm teaching them manners and loving them.
But here's the thing....Have I ever just let it go, and done something silly...like a Banana Split for dinner? What? No..maybe after dinner as a snack. Or maybe a little sundae in the afternoon, but never FOR dinner.
A little heart guy named Ryan inspired this whole thing....Let's start there. Ryan is a heart buddy of Trenton's. He has Down syndrome and a congenital heart defect. He's not 2 years old yet and has spent a lot of his short life in the hospital. His family has now had to make the awful decision to move to palliative care. Little Ryan's heart is too weak. His lungs, too damaged. There is nothing they can do except make him comfortable. So, his mom is thinking of all of the things her little guy will never do. And one of those things was...He will never have the fun of eating a banana split. He is living out his time in a hospital. It's heartbreaking. SO....another heart mom (I love heart moms) decided we should throw a Banana Split Party for Ryan! And...well...Ice cream? heck yes...I'm in.
So...We threw out the rules and had Banana splits for dinner last night.
Brother Baer really couldn't get over this rule change. He kept saying...This is the best dinner EVER! This is the best dinner EVER! A Banana Split for dinner? Can we add sprinkles? (Heck yea!) I can't believe we get to eat a banana split for dinner!
Little Baer finished his off and even signed MORE for seconds. (Which I totally gave him) And ate every single bite of it off a spoon! Letting me feed him. If I put the spoon down to take a bite of mine he promptly picked it up and handed it to me. No screaming...No fighting to feed from a spoon....Nope....Just ate every last bite. And enjoyed it!
Likewise Baby Baer chowed down and loved it! I'm sure she was wondering if I had fell and bumped my head...ice cream for dinner?
And myself? I took some pictures. Relaxed (Had a SUPER easy clean up...BONUS!) and realized that every now and then it's so important to take some time to enjoy things. And enjoy it with meaning. To purposefully make an effort to enjoy those things in life we all take for granted. (Like Ice cream!)
So far over 16 other countries and almost all 50 states have participated in this banana split party on Facebook! Is that awesome or what? It's like a revolution.....Ice Cream and Family....Enjoying together.
Saturday, June 9, 2012
Dream Night at the Zoo is always so much fun! I thought I would share some pictures from it! We have been so busy lately with all kinds of activities and family things. I have been so happy to spend some much time with everyone, together, as a family!
The Baer's and the Paparazzi! LOL Cameras and Video Cameras everywhere!
Little Baer loving his ice cream sandwich!
just thinking....pondering life. (I wonder if this is the mommy Gorilla who just lost her baby this past week? If so, she is sad and in pain I'm sure!)
Pretty Baby Baer
Checking out the fish!
Pretty the Sting Rays!
Through the Tunnel! :)
Brother Baer and the Polar Bear!
Dancing with Radio Disney!
Sharing a bite to eat!
So tired! It's dark....I'm pretty sure she hasn't been up this late in a long time! (for fun reasons that is.)
We had a great time! i haven't been doing any great projects or anything lately. Basically we are just enjoying family these days. I'll get back to working and creating someday soon. But for now you will have to enjoy the family time pics! :)
Here is Brother Baer on his last day of school last Monday! He is officially a second grader! It's officially Summertime! I love it!! i love the sunshine, the garden, the swimming and fun stuff we can do as a family! I love not having to rush around for the bus in the morning, or having to talk to the school 17 times a week. I love having an IEP break and a break from finding lost library books and doing homework.
Now I have endless days of non stop talking. Non stop! Seriously....Brother Baer talks every minute of every day he's awake. Is this how all kids are? Because I don't remember this with Goldilocks.
He starts the second he gets up. And by around 9 AM he has run out of things to talk about. So we have conversations like this (ALL.DAY.LONG):
Have you ever had a green head mom?
I think it would be cool to have a green head.
Have you ever seen anyone with a green head?
I think we should look up green heads on the internet. Can I use the IPAD.
and this one
You know Kapachupa mom? You know who this is? (Show's me toad)
How about that red bird from Angry birds? You know him?
you know what my favorite animal is?
I need a Mario Brother costume.
Where is my money I need to count it.
Non stop talking.
I used to have a few minutes during nap time to do things in peace. Nope...that's all gone now.
I ask him to stop talking for a few minutes, he tells me he CAN'T!
He stalks me too. Follows me every where. Stands outside the bathroom door. Sits beside me. Or stands beside me. and he talks....and talks.....and talks.
I might not make it till September.
Monday, June 4, 2012
Working outside today getting my garden planted and weeding the flower beds. (Which is a never ending story). I thought I'd share some pictures of our work so far.
Baby Baer helping!
These are supposed to be Orange. Can't wait till they bloom.
Love this bed around the flag pole! (Which will be painted soon with the fence. YAY!)
My Save the Manatees Flag for summertime
Pink and Purple beauty!
Progress in the Garden. Tomatoes, Green Bell peppers, Orange Bell, Yellow Bell, Sweet Banana Peppers, Mild Jalapenos, Cayenne peppers, Zucchini, Yellow Squash, Cucumbers, and Green beans!!
Peppers!! I still need to get lettuce and radishes planted and some more cucumbers.
Feed the Herbs tonight. They are really getting big. I can not wait to start cooking up some fresh vegetables this summer and cooking with my herbs!
Is your garden in? What are you growing? Did I forget anything?
Saturday, June 2, 2012
Remember Langley? This amazing, beautiful little boy in Eastern Europe? Langley is still waiting for his mommy and daddy to step forward and rescue him. Rescue him from a life in a crib, locked away in an institution. Locked away from society simply because he has Down Syndrome. I love this little boy. I want him to be saved. As a matter of fact there are a lot of people who love Langley. I wish he knew that love. I sometimes pray that he can feel our love wrapped around him. That he is loved. He is amazing. He is worthy! That all us mommas out here love him! We just can't tell him. Can't hug him. Can't hold him.
Now look at this little boy. Also perfect and beautiful! You know him as Little Baer. Does he deserve that fate? Would you be ok with locking him away? He has Down syndrome too. Just like Langley. Is he not worthy? The only difference between these two boys is that one was born here in the US, where we have opportunity, education, chances, where we love. I look at Little Baer and I can't imagine anyone ever thinking for a second he is not perfect, not worthy, not lovable.
I can not turn away. I can not un-see the things I have seen. I can not believe that this perfect little boy doesn't deserve an amazing life. Full of love, hugs, kisses, bedtime stories, and a family. Now that I know children like my Little Baer are locked away simply because they have one chromosome too many I can NOT unlearn that fact. And it breaks my heart.
Look again at Little Baer.....and at Langley. These two boys, from different sides of the world. Both with 47 chromosomes. One valued. One not. One has a mommy. One does not. One has a family of brothers and sisters. One does not.
PLEASE my friends, we must change this!
So...here's the deal. During the month of June Jen from www.jenandjoeygogreen.com is running a giveaway for the month of June.
You can get involved and help save Langley. I'm not asking for money (although that will help) All I'm asking is PLEASE share and Do Random Acts of Kindness in June in Langley's name.
And PLEASE pray for this beautiful, amazing little boy.
Go check out The giveaway HERE
Watch the video! Share it! Blog it! Tweet it! Something....Anything....Just please don't ignore this beautiful soul. Please don't ignore this amazing, perfect child of God. And remember, God does not make mistakes!
Monday is the end of the school year for Brother Baer. His teachers are AMAZING and have worked so hard with him and for him this year. I had to get them something to show my appreciation for being so wonderful this year. So, I thought I'd share this super easy, super cute, and super inexpensive gift idea! (Stolen from Pinterest and made into my own. haha) Here are their special end of year gifts. (They totally deserve way more though!) Inside each cup is a Candy Bar and in the "Flag" is a $5.00 gift card to Starbucks! Who doesn't love a coffee? Or a Latte? Or some Tea? and at $6.50 each (That includes the tissue paper and candy bar....which is for a fundraiser for the Heart walk! ) I was able to afford to give them to his teachers and bus driver/bus driver helper!
I can't believe that Brother Baer is done with first grade!