Truthful Tuesdays

I will return to my regularly scheduled CHD Awareness programming in my next post, but today I wanted to try something new ...

Truthful Tuesdays

I don't have the button graphic to go with this post today (*bad blogger*), but I will have it next week.

So, today's Truthful Tuesdays question (borrowed from Elizabeth at http://confessionsfromaworkingmom.com/) is:

"What body part are you least satisfied with?"

Oh my...I have to choose just one? Really? Is "entire lower body" an appropriate response? I have the arms I had back in my softball days (I was a catcher) once again, thanks to my hefty little man, but from mid-torso on down looks like a train wreck. Even if you overlook the stretch marks and cellulite, it's a hot mess. I have always been pear shaped, but my post-baby body has given this shape new meaning. My muscle tone is completely AWOL and my stomach ... ohhhhh my stomach ... I can't even begin to speak about the massive damage pregnancy did to my stomach (and yes, I would do it all over again for Drew!).

Also included in Elizabeth's post, is a pledge to be "hot and healthy" from now through the holidays ...

I pledge to help myself become "hot and healthy" by doing the following:

*Planks/Ab Exercises 3x every week
*Eating right, darn it!
*Walking 6-12 miles/week

Unlike Elizabeth, however, I refuse to post any before pics. More power to you my friend, I am not that brave. If you're looking for those, head to my FB account and check any picture from mid-pregnancy on...you'll get the picture.

So now, I am passing it on to you ... what will you do to become or stay "hot and healthy" this holiday season?

Life as a Single Mom

...for a few days anyway.

In the last two weeks, I have gotten to try my hand at being a single parent not once, but twice. I don't like it. Don't get me wrong, I am staying at home with Drew because I WANT to, but that doesn't mean I don't like a little "ME" time at the end of my long day.

Oops, did I just admit that?

I guess I did.

Well, I do. I can't help it. I like to do whatever I either need to do or want to do during my ME time. Uninterrupted. At my own pace. And do it up nicely.

Especially now that I am working from home.

And, quite frankly, I don't get that during my single parenting days. So, to all my single parent friends, my hat's off to you...I don't know how you do it. I am too pooped when Drew hits the hay to do anything but lay on the couch after I finish up the evening "chores." And while I love me some Dancing with the Stars, it isn't exactly the best use of ME time.

Today's Single Parenting Adventure:

I get to drag Drew along with me to get my eyebrows waxed. I am thinking about all the ways this can turn out to be a disaster so I may have a fighting chance at avoiding it. I think the women who will be there getting manis and pedis will be grateful if I've at least thought out how to win the war of the screaming toddler so they may continue with their relaxing days at the "spa." (I really don't know what else to call it...my nail tech does my eyebrows. She's awesome. Go see her. Ly at Jolie Nails) Anyway, I will be "that Mom" today. The one who, undoubtedly, interrupts another Mom's serenity for a few moments by dragging my 17 month old to the place no 17 month old should go. To the mother's sanctuary.

Again, single parents, I have to hand it to you...I don't know how you do it.

Honesty Pays Off!

I'd like to thank both Jade and Elizabeth for giving me the "Honesty Award" at the "Bloggies" (as I am calling them) that are circulating the internet these days. Seriously though, thank you. My goal here is to be as honest as possible about my struggles, my joys, my faith and my family.

And so it continues ...

Here's how the award works:

1. Thank the person who gave you the award and link to their blog.
2. Share 10 honest things about yourself.
3. Present this award to 7 other whose blogs you find brilliant in design or content.
4. Tell those 7 people they have been awarded.

OK, here goes ... 10 honest factoids:

1. I am a complete control freak. I hate when things are outside of my control...I try to pray on it, and the Serenity Prayer is good, but I still struggle with this daily

2. I used to play old musical albums (Sound of Music, West Side Story, etc...) and put on "shows" for no one in our living room. Typically this was done when no one else was home, so sadly after I turned 12 yrs of age. Yes, when I should've been figuring out which outfit I was going to wear to a dance or how to talk to the boy I liked, I was performing as Leisel (my fave song was "Sixteen Going On Seventeen") to our couch. Hey...being the youngest by over 9 yrs kind of makes you like an only child sometimes....hence why I also held "skating parties" in my basement and just skated around to music on my own. (holding an "L" to my forehead)

3. I have recently developed a fear of fun things such as skiing, riding rides at amusement parks, and just generally anything that might cause death by some freak accident. I am no fun anymore!

4. I am going to try and run a 5K in May. I think. I am going to start training in January because if I start now, Christmas and my schedule will derail that. I am looking into programs now...and I am taking suggestions.

5. I love things being neat and organized, but I cannot throw anything out! I am getting better about this, but between Bill and I, our house is full of stuff that has no business being there. Our basement looks like a bomb went off it it. And I have more stuff waiting for me "up north" in storage. *sigh* One day I'll have a clutter free home...I just know it.

6. I am OCD about labeling or organization, however. Everything has to be in alphabetical order, or symmetrical, or centered EXACTLY in the middle of where it should be. My clothes are in order by length of sleeve (or absence of) for shirts and skirts first, then capris, then full length pants, for bottoms.

7. I am slightly overwhelmed by how large of a task bringing awarness to CHD is. It seems almost insurmountable at times...it seems like we will never get there...that it will ever be on the same level as Autism or Breast Cancer. Where is our Jenny McCarthy (only less abrasive)?!?! How can Dr. Oz and The Doctors have shows on accepting hermaphrodites and smelly ear wax, respectively, and NOTHING ON CHD?! Blows my mind.

8. I am still angry about my Mom dying. Always will be. It's not fair that any child should have to grow up without a parent.

9. I am still angry about my niece dying, my cousin's son dying, my friend's children dying, any child dying. Always will be. It's not fair that any parent should have to bury a child.

10. I am thankful everyday for my faith, without which I would've surely lost my sanity by now. It gives me an achor, something to cling to, even in my darkest days. I don't know how people without faith survive hard times.

OK, Elizabeth was right, that was HARD!!!

Here are my 7 "awardees": (you will be receiving your personal notifications ASAP!)

1. Jess (http://themcclenahans.blogspot.com/)

2. Juli (http://babymaverick.blogspot.com/)

3. Andrea (http://redbudcorp.blogspot.com/)

4. Stephanie (http://kammeraadfamily.blogspot.com/)

5. Levi (http://www.babyaidensjourney.com/)

6. Kelly (http://chdbabies.blogspot.com/)

7. Isabelle (http://andreswalkwithchd.blogspot.com/)

More Newborn Screening Information!

This is exciting stuff people! IMPORTANT and exciting. It cannot be stressed enough. Newborn screening measures are SERIOUSLY LACKING in this country. Something as simple as a pulse oximetry test could save many lives, and yet, it's not done as part of a routine screening on a newborn in US hospitals! For those of you not familiar with the pulse ox, they take the measuring "device" and tape it to the infant's toe...it measures oxygen saturation levels. Many murmurs cannot be detected, or the baby is deemed to be bruised when he or she is actually "blue" (cyanotic), but O2 sats don't lie. If that baby isn't getting enough oxygen to his/her body, this will pick it up in under 5 minutes. No lie. And it's not being done. Just mind boggling.

Please read and follow this exciting new development for not just CHD, but many other defects, illnesses and syndromes:

http://www.nih.gov/news/health/oct2009/nichd-19.htm


Also, one of my Heart Mom friends is working closely with this type of research for CHD babies. Here is her latest update to our group:

For those who didn't catch it this week, the Nationa Institutes of Health announced its Newborn Screening Research Program named in memory of Hunter Kelly, football player Jim Kelly's son who died from a rare but genetically screenable disorder a few years back. The program offers new funding mechanisms - among other things - to support universal screening initiatives.

This is just one of several windows opened recently to start advancing the use of pulse oximetry to screen babies before discharge for CHD.

I meet tomorrow with an amazing group of people here in Minnesota who have offered their time and professional insights to review the landscape and create a viable opportunity to address newborn screening for CHD here and nationally.

The team includes the top cardiologists, neonatologists, pulmonologists from facilities here and officials from the state department of health. As a reminder, the recent AAP and AHA report stated that in their pulse ox study, false positive rates were just .035 percent in infants screened after 24 hours.

The test potentially can identify significant or life-threatening heart defects that may otherwise go unnoticed or at least unnoticed before a newborn is released from the hospital.

Early identification of certain defects is important, and can allow doctors to begin appropriate treatment or transfer to a specialty hospital.

The benefits of the oxygen screening test clearly outweigh the risks.

The overall cost of the test is reasonable, and is about the same or less than the cost of other newborn screening tests.

The need for additional study has been supported by a recent joint statement from the American Heart Association and the American Academy of Pediatrics, which also calls for more research to determine whether the test should become part of the routine assessment of all newborns in the United States. (Source: American Heart Association, 07-07-09)
This is what we are doing - and the path has presented itself to possibly run the pilot program inin tandem with a national pilot to screen for hyperbilirubinemia (sever, life-threatening jaundice). This could create efficiencies in cost, training and reporting for the nursing staff, while also putting both initiatives on a faster track for adoption. The doctor at Mayo who serves on the national newborn screening board has offered to be of assistance in any way.
I am excited beyond description about all of this.

I meet again next week with congressional members to tout the value of this initiative - and of course to support the Congenital Heart Futures Act. Keep you all posted. As always, PM me if you need to get in touch...

And of course - love and prayers to our families going through challenges right now.

Angel Aiden

Please pray for the family of Aiden Matthew Beers. After battling through an SVT episode that nearly took his life a few days prior to his surgery, then making an astonishing recovery from that, Aiden was called home to Jesus Friday evening. Levi and Tracy are questioning their faith right now, and rightly so. They are angry, they are grieving, they are feeling the ultimate hurt one can feel...to lose his or her own child. It isn't right. The good news is: God can handle it. He can handle our anger, our sadness, our venom. We must try to cling to Him in times such as these, but if we can't, He understands. And when we're ready, there He is, to welcome us back into His embrace. God's ways are not our own, that has been said to death...and is annoying when one is grieving, as I can attest to. Unfortunately for us humans, it is the truth.

I leave this post with some words of love for Aiden and comfort for Levi and Tracy. They are songs that I love and that I hope bring you some comfort during this time.

Godspeed (Dixie Chicks) ... you can hear this on my page ...

Dragon tales and the "water is wide"
Pirate's sail and lost boys fly
Fish bite moonbeams every night
And I love you

Godspeed little man
Sweet Dreams little man
Oh my love will fly to you each night
On angels wings
Godspeed
Sweet Dreams

The rocket racer's all tuckered out
Superman's in pajamas on the couch
Goodnight Moon, we'll find the mouse
And I love you

Godspeed little man
Sweet Dreams little man
Oh my love will fly to you each night
On angels wings
Godspeed
Sweet Dreams

God bless Mommy and matchbox cars
God bless Dad and thanks for the stars
God hears Amen wherever we are
And I love you

Godspeed little man
Sweet Dreams little man
Oh my love will fly to you each night
On angels wings
Godspeed
Godspeed
Godspeed
Sweet Dreams

With Hope (Steven Curtis Chapman)

This is not at all
How we thought it was supposed to be
We had so many plans for you
We had so many dreams
And now you've gone away
And left us with the memories of your smile
And nothing we can say
And nothing we can do
Can take away the pain
The pain of losing you...

(chorus)
But we can cry with hope
We can say goodbye with hope
'Cause we know our goodbye is not the end, oh no
And we can grieve with hope
'Cause we believe with hope
There's a place where we'll see your face again

And never have I known
Anything so hard to understand
And never have I questioned more
The wisdom of God's plan
But through the cloud of tears
I see the Father smile and say well done
And I imagine you
Where you wanted most to be
Seeing all your dreams come true
'Cause now you're home and now you're free

(chorus)

We have this hope as an anchor
'Cause we believe that everything
God promised us is true so...

We wait with hope
And we ache with hope
We hold on with hope
We let go with hope

Thirty-One/First Support Group Meeting

As I've posted under the "my info" section, I recently became a Consultant with Thirty-One (www.thirtyonegifts.com). I am excited about this new opportunity in my life, as it will hopefully give me a way to earn money while staying at home with Drew. We have been very blessed that I have been able to be home with him for nearly one year and I would like to continue to do so. I am also used to paying my own way in life and feel that I need to contribute financially to the family as well. Please consider visiting my website, as the holidays are coming up! There are tons of cute items for little girls and boys, teen girls, ladies of all ages and new Moms!!! My website is located on the right, under my picture. My first party, my launch party, is this Thursday. If you are a FB friend, you should've received an invitation this past week. Even if you're not able to make it in person, I am able to take outside orders via my website. Simply go to Order after selecting your items and it will have you choose your hostess. Select my name and place your order. The order will be submitted on the day on my party and can be shipped directly to you! Happy Shopping!!

It's My Heart - Metro Detroit News ...

Our first support group meeting will be Monday, October 26th, at 7:00pm. We will be meeting at the Plymouth Library in the Storytime Room. Please feel free to come on out, meet us and share in our common bond/lend support to one another. Also, if you simply want to attend because this cause means something to you, but you have not been directly affected by CHD, we would LOVE to have you. This is not just for those of us affected by it. In the months to come, we hope to have Adult Survivors of CHD to speak at our meetings. This first meeting will be more of a "roundtable" format. It will be pretty low key and we will be able to talk about our experience with CHD, or what drew one to the cause if he/she has not been directly affected by it. In addition, we can discuss our concerns, fears, experiences with the local hospitals/surgeons/cardiologists and what we would like to see happen as far as raising awareness about CHD and funding for research are concern.

We hope to see you there!

Fall Festival with CHM and PBS - Detroit (UPDATE!)

We just found out last Friday that Children's Hospital of Michigan (CHM) is having a Fall Festival on Saturday, October 24th at the Etkin Center in Southfield. This event will be held in conjunction with Detroit's PBS station. We are hoping to have a table there, but even if we don't, officers will be on hand with information on It's My Heart. Please come out and learn more about the services offered at the Etkin Center, as well as enjoy fun fall family activities. And, of course, come on over and visit with those of us in white "Artey" polos! (Artey is pictured above)

Details ...

DMC Children's Hospital of Michigan/Detroit Public TV Fall Festival

Date: Saturday, October 24, 2009
Time: 12:00 pm - 3:00 pm
Address:

Alex J. Etkin Specialty Center

29120 Franklin Road

Southfield, Michigan 48034

Map & Directions

An exciting event for families which will include PBS characters, cider and donuts, pediatric experts and fun activities such as a costume contest, crafts, bounce house, petting zoo, dancing and free pumpkins.

EDIT: We will not be able to attend this function after all. Etkins Center does not have a Cardiology Center, so CHM feels it's best if we simply wait until they have an event with Cardiology and/or Cardiovascular Surgery. So sorry for the late notice!!!!