Wednesday, March 2, 2011

It has been a while

and so much has happened in the heart world.  I hate these weeks when heart babies pass away.  It is heartbreaking and also brings out an anger in me that we can't 'fix' all of the babies.  There are some days that my mind works overtime thinking about all the different ways I think we can fix our little that does not exist.  I think about how long transplants have been around and it really bothers me that we have not been able to figure out how to keep people from rejecting donated organs.  It seems like it is something we should have figured out by now.  I feel like we should be further along and I often wonder if it is because so few doctors are pioneers the way they used to be.  Do we just have great surgeons, but no one that can think outside the box and figure out a way to actually fix our babies?  Maybe it will be something mechanical, maybe a different surgery, maybe some medicine...something.  I don't know, but I know that babies dying from CHDs is totally unacceptable...babies dying from anything is totally unacceptable!

Onto some other news.  Anyone in the northeast Ohio area is invited to a luncheon with Hope's dietitian.  She will be talking about diet and effect on heart kids of all ages.  She will be answering any question you might have related to food, feeding, etc...She is a wonderful dietitian and we love her...she has given us some brilliant ideas.  She will be meeting any heart family that would like to join us on March 12th and Buca Di Beppo in Strongsville, Ohio at South Park Mall at Noon.  Lunch will be $17 per person.  Children 4-9 are half price and under 3 are free.  Even if you have no questions, please join us to meet other heart parents from the area.

Finally...we have a date!  The Congenital Heart Walk in Cleveland will be help on September 17th at 11:00am at Wade Oval in University Circle.  The website should be up soon and I will be posting a whole lot more information here as we get things rolling.  I am really excited to be helping with this wonderful fundraiser for The Children's Heart Foundation and the Adult Congenital Heart Association.  Both organizations are very near and dear to my heart and our walk will benefit both organizations.  I hope that if you are in the area you will consider walking on Team Hope or forming your own team!  We are looking for a HUGE turnout for this event.  If you know of any company that would like to sponsor the walk, please let me know.  We will provide a LOT of recognition for any corporate sponsor.

I am going to finish this post with some pictures...enjoy. gate is now up!
It was actually in the 50s...still snow, but warm for Ohio.  Our weather has been crazy cold and snowy this year.
We can't wait for SPRING!


  1. I share in your anger and frustrations, truly. It is unacceptable what is happening to our babes; they deserve so much more. I found myself in tears while driving today, wondering: what else can I do, there has to be something more. To save lives. So, your post helped me know that I am far from alone in my thoughts.

    Congrats on the CHF Walk in Cleveland. Phoenix had its first last year and it was a great experience!


  2. Can't wait for the walk. I will definitely be in attendance.

  3. Wish I lived closer, I would LOVE to attend both the dietitian meeting and the walk!! Hope is so adorable!! Love the pics =)

  4. Great job in assisting with the walk in your area!!

  5. I feel your anger. I often share it. {{{Hugs}}}

    I wish I lived a little closer to attend the lunch with the dietician.

  6. I wish there was something that could be done as well. It is so sad for me to hear another child grew their wings.
    I am very proud of all you are doing to bring awareness.
    Love the photos, she is so tiny yet so big.

  7. I'm in agreement with your frustration as well. Guess we have to start some place, and what your doing to raising awareness is HUGE! So proud that you are motivated to help in those ways.

    Also, LOVE the pic of Hope trying to get up the stairs. How precious is that?!?