October 29, 2010

Congenital Heart Walk - November 7th!

The Congenital Heart Walk and 5K Run/1 Mile Family Fun Walk at Tempe Diablo Stadium on Sunday, November 7th is less than a week in a half away! As many of you know, our daughter Alexa was born in 2008 with congenital heart defects that required her to undergo several open heart surgeries and other invasive medical interventions in her short two years of life. Unfortunately, she will require further heart surgeries down the road and lifetime cardiac care. Motivated by the needs of our daughter and all families affected by CHD, we are proud to have become directly involved with The Children's Heart Foundation.

The goal of The Children’s Heart Foundation is to bring health, hope and happiness to children impacted by congenital heart defects, the number one birth defect in the United States. They accomplish this goal by funding the most promising research to advance the diagnosis, treatment and prevention of congenital heart defects. We are joyful that our daughter is happy and thriving due to medical advances in the treatment of CHD!

The Congenital Heart Walk and 5 K Run/1 Mile Family Fun Walk is an exciting new national joint effort between the Children’s Heart Foundation (CHF) and the Adult Congenital Heart Association (ACHA). Proceeds from the event will go towards researching and improving the quality of life for everyone living with Congenital Heart Disease (CHD). Did you know that CHD is the number one birth defect? 1 in 100 babies are born with a CHD, and there are over 1.8 million children and adults living with CHD today.

The 2010 Phoenix Congenital Heart Walk and 5K Run will include:

• 5K Walk

• Timed 5K Run

• 1 Mile Family Fun Walk

. Sports Talk Radio "The Fan" 1060 AM Roc and Manuch as our Emcees

. Guest appearance by former Cincinnati Reds star Aaron Boone

• "Healing Hearts" Family Festival- Bounce house, slide and carnival games by Inflatable Fun!

. Free food and refreshments

. Yippee Yoga classes for kids

. Performance by AZ Swing Kids

. Build A Bear Mascot

. Craft table

. and much more!

Have you or any of your friends been looking for a 5K run that you can WIN? This is a first year event, and we are expecting a small number of runners, so a chance of winning in your age group is BIG! Not a runner? Bring the family and join us for one of our walks and our "Healing Hearts" Festival.

Register today at www.congenitalheartwalk.org. This is a 100% fundraising event, and there is no minimum donation to register. If you want to wait and register at the event, you can do that too! There is no cost to the event, but donations are welcome (and if you want a t-shirt you have to raise $100). If you can't attend the event, but would like to send a donation you can do so online with a credit card or you can send donations to (checks should be written out to Congenital Heart Walk):

If you wanted to walk as part of our team, just click on this link to our website and you can join "Team Alexa" or if you can’t walk you can donate in her name!


We will also be printing Team Alexa shirts so if you would like one, please let me know the quanity and size, they will be $10.  This is the design I came up with (I'm not a graphic artist but they should work) ; )

Front of T-Shrit
Back of T-Shrit

I look forward to seeing you, your family and even your family dog (yes, dogs are welcome!) at the event! Please forward this e-mail to anyone else you think would like to attend the event!

Hope to see you all there!!

p.s. If you are in need of family photographs I have also pledged to donate 5% of every purchased session to The Children’s Heart Foundation and Mended Little Hearts of Phoenix.  You can see my website here:

Wild Child Photo

October 26, 2010

Cardiology Update

Hello everyone! I know it's been while.  I know everyone is busy so I will spare you details {for now} about how I've also been so busy ~ too busy to write. 

Anyhow, this post is about Alexa and her cardiology appointment done yesterday Monday, October 25th.  I was a little nervous about the appointment because I knew she was be getting an echo done to check on the function of her heart not just a pacemaker check. 

Okay, so first of all I had to say this was the first appointment she had with no tears!  Yay baby girl! She behaved like a such a big and brave little girl.  She is 25 months old and weighs 28.6 pounds and is 35 inches tall (almost 3 feet!) I beleive that is about 90th percentile for height and about 80th percentile for weight! So happy my heart baby is thriving!

Okay, so they also did a blood pressure check and that was good and then moved on the echo.  Took off her shirt laid down next to her on the bed and gave her the lolli pop.  She was happy and calm the whole time!  She even gave me back the lolli pop and just relaxed and watched the Dora video they had on.  She did not fuss or complain not even once! I knew they were getting great images and would know exactly how her heart was functioning.  About 30 minutes later the echo was done.  We then waited for the results.

Dr. P came into see us.  She was not scared of him this time.  She actually found him a bit amuzing and engaged with him in his silly attempts to make her laugh and smile.  Doctor said the echo looked great! Her ventricles were great, no leaky valve, etc. I was so very releived!  So very relieved.  He did mention one thing however, that they will keep on eye on which is a small bit of stenosis where the conduit was sewn into to the top part of the pulmonary branch.  Has anybody elses child had this?  How fast did it change?  What was the protocol?  He said the number, I think pressure is 30 and they will just watch it, nothing to do about it right now.  He said that number is considered low to medium.  She will have another echo in 6 months to check on things.  He said when it gets to maybe around 50 he will decide then if they will do a heart cath to try and balloon the area a bit and buy some more time.  He said he does not expect the number to raise drastically though it should be a slow process.  I sure do hope so! Plus he mentioned once she hits 3 her growth should slow down also allowing more time.  She will just need a home transmission pacemaker check in 3 months but we don't need to go into the office until next April, I can't beleive it! Oh and she is also off all medicine for the first time in her life!  At this point she was only taking a baby aspirin daily but he also said she did not need it anymore! Woo hoo!

So overall it was a good almost great appointment.  I was very thankful.  He also checked her pacemaker and said also all was good she had to go pee pee potty so he kind of hurried up at the end and I did not get much details about the pacemaker settings just know all is good.  He said it was the first time I did not go into the office with a notebook of questions.  I don't think it was the first time, but he was right, I was more relaxed than with my usual 20 questions per visit.

So Alexa is doing great! She is totally my wild child.  Fearless as can be which scares me.  She climbs on top of things, runs away, wrestles our big lab dog.  She is two now! And I feel terrible I didn't post any little stats when she turned two, but remember at the beginning I mentioned how busy I've been?  So yeah, that's why.  I will say however, that she is currently obsessed with Toy Story and loves all things Buzz, Woody and Jessie.  Actually as I type this, she is here wanting me to find her Toy Story music cd so she can dance.  =)


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