Tag Archives: Pediatric cardiology

Happy Thanksgiving!

22 Nov

In addition to being thankful for my family and friends, I am so thankful to be part of the heart community!  We have met so many wonderful friends who have greatly impacted our lives.  One organization we are honored to be a part of is Whole Hearts Foundation.  If you are looking for an organization to support this holiday season, please consider donating to Whole Hearts!  You can also follow them on Facebook.  As a very proud mamma of a child with a CHD, I have to point out that you can see his sweet, smiling face on their website.

Happy Thanksgiving from our family, to you and yours!!

Wear Your Scar with Pride!

8 Nov

When I was 15, I had surgery on my left wrist, via the top of my hand.  For whatever reason, I was always very self-conscious of this s-shaped, two inch scar.  I remember worrying (years before I was ever even engaged, mind you), what my wedding pictures would look like with this scar on the hand that would one day carry my wedding ring.  I look back now and realize what a waste of time and energy it was to worry about such a trivial thing!  I must admit, I was made to feel even sillier, as I tried to take a picture to display here, and couldn’t even get a shot that showed this thing that bothered me for so many years.

I thought about my scar today, when I watched the video of Brooke Burke-Charvet on her ModernMom blog, as she relayed that she has been diagnosed with thyroid cancer, and described where her scar would be.  I’ve always admired her as a mother and a businesswoman, and think she is doing a tremendous job meeting this challenge head on.  In my opinion, no matter what scar she is left with, she will still be just as beautiful as she is today!

I thought about the ‘vanity of a scar’ and when my ideals changed.  Yes, vanity; you should celebrate your scars!  There is a story behind every single one.

van-i-ty  Noun: Excessive pride in or admiration of one’s own appearance or achievements.

I honestly have to say, my view changed when I became a mother.  Don’t get me wrong, I can still be vain from time to time, but being a mom has literally caused me to lay my own life on the line.  Just prior to being 23 weeks pregnant with my first baby, my sweet boy, I flew to Boston for him to have fetal surgery on his tiny heart.  After the surgery I was left with three small scars, but had given the doctors permission to make a large incision, similar to a cesarean section, if they could not adequately access him during the procedure.  I could write an entire book with just that time in my life, but that is not the reason for my post; this post is about scars.  I have since learned to embrace and even celebrate scars.

My sweet boy has had 16 surgeries so far; seven of those surgeries have cut into his tiny chest.  These scars have always been a reminder of what he’s been through and proof of how truly strong he is!  He laughs when I tell him he is stronger than I will ever be.  His reply, with his big smile, is always “you’re joking me!”  One day he will understand!  In the meantime, we remind him that his scar is cool and “chicks dig scars” and that we are so proud to watch him with each new day and every new experience.

When I told him that there was a lady that I heard about who was going to have surgery and was a little worried about the scar she would be left with, he jumped right at the chance to share his scar and to show, yet again, that scars are cool!  I don’t know Brooke, and she may never see this, but if it helps even one person – then what we are doing does make a difference!

My Happy Little Heart-Hero!

Physical Therapy for the CHD Kid

20 Oct

For the past 25+ years, doctors have been honing the techniques that are saving the lives of children born with heart defects that are similar to my son’s.  The oldest person I know with his condition, Hypoplastic Left Heart Syndrome (HLHS), is 27 years old.  In addition to being a wonderful inspiration to our family; allowing us to see all that these kids are capable of, our dear friend,  Jeni Busta, has also answered the many questions we have asked and has offered great advice for living well with this condition.  One of the things she recommended we do with Landon is to get him into physical therapy.  Many of these kids end up with back issues, flexibility issues and trouble with scar tissue.  As these kids live longer lives, it is necessary to not merely make sure their hearts keep beating, but also make sure to take a whole body approach.  While we do allow Landon treats and sweets, we have built a foundation for him with healthy eating.  We are ensuring that his physical strength and flexibility are addressed, as well.   I checked with Landon’s pediatrician and cardiologist and received the go-ahead and prescription necessary to receive physical therapy.

We found a wonderful Physical Therapist (DPT) at San Diego Sports Medicine Physical Therapy Center.  Dean works so well with Landon and really makes things fun for him, while keeping his attention during a one hour session.  Landon really looks forward to his PT sessions!  For him, it is a fun time, not just ANOTHER doctor’s appointment!  In the few months Landon has been receiving PT, I have really noticed his balance, jumping and strength have greatly improved.

I took a few photos of our latest session to provide an idea of the types of things they work on.

Scar Massage

Not all doctors think this method is necessary.  Our cardiologist didn’t seem to think there would be a benefit, but gave the OK for us to do it.  Landon’s scar does seem much less lumpy and thick than before.

Rolling the Fitness Ball

Stretching on the Fitness Ball

The first time Landon did this stretch on the fitness ball, it really showed that it was such a relief for him.  He was so relaxed!  The look on his face was priceless; he almost looked shocked that he was able to get such relief from a stretch.

Assisted Pull-ups

Over-hand and Under-hand Medicine Ball Throw

This is just a sample of what occurs during one of Landon’s PT sessions.

Considering that during Landon’s first 5 1/2 years of life, he cumulatively spent an entire year recovering from his five open-heart surgeries, pacemaker surgery and numerous heart caths, the benefits he is receiving from physical therapy are beyond measure!

*Our many thanks to Dean Makredes, DPT, for allowing us to publish our experience with him and for the wonderful care he provides Landon!

**DISCLAIMER: This post is in no way providing medical advice.  Before participating in any of the mentioned techniques, I would advise you to check with your physician, just as we did prior to starting our program.

A Gift From a Gifted Heart!

25 Sep
I am so happy to share that Landon raised the $500 necessary to receive the designation of MIRACLE MAKER at Rady Children’s Hospital for his fundraising efforts!  A few Payments are still processing, but he raised $960 in time to celebrate his success on his 6th birthday on Sunday!  Even though this year’s birthday has passed, our desire to continue to raise money for The Heart Institute at Rady Children’s Hospital has not!  The site will remain active and we continue to ask you to share our site with your friends.  Thank you to everyone who helped us reach our goal!
Photo courtesy of:

A Gifted Heart

11 Sep
School has been back in session for almost a month, and we are getting back in the swing of our usual school-time schedule. Though I strive to raise exceptional little people, there is a part of my life I work ever so hard at making as “normal” as possible; the normal ever day life part.
In September of 2006, I was preparing to welcome my first child, a baby boy. At that time, I had already been informed that he would be born with a special heart. This is where we kept everyone informed of what was going on: http://www.babysites.com/sites/babyhoward/default.asp?page=myjournal&seq=1&cmd=prev&story=255084
I have made the choice that every day I wake up…I have children… plain and simple. I don’t wake up and think, “I have a child with a REALLY big problem.” Sure we have to account for meds and doctor visits and surgeries; though thankfully, the majority of the surgeries are behind us now. But, we get right back to our “normal” life. This brings me to last night. My sweet boy’s teacher emailed that he is getting his work done more slowly than the majority of the class. We are now readying ourselves for a new chapter in the ever-evolving life with a CHD (Congenital Heart Defect). We will be looking into what may be causing him to work at this pace. I just keep telling myself “slow and steady wins the race!”
Thankfully, his “Gifted Heart” has allowed us to be blessed with knowing other amazing families who are walking this same path! As I sat there this morning feeling a little defeated over another hurdle that has been placed in front of my son, I remembered that a heart-dad, who also works in schools, posted about options that are available to our kids. http://blog.wholehearts.org/?p=45#comment-264 Thanks, Trent, for making me remember we are not alone in this and also for giving us some great information as we learn about this next phase in our lives.
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