Thursday, February 7, 2013

Our Dream Team

When I was at the conference in Cincinnati 2 weeks ago, an amazing doctor there, Steven R. Neish, M.D., S.M., remarked that "Congenital Heart Disease is a Team Sport." Wow. What a great statement. And today, it was never more clear to me than in this moment...
Bodie is holding up his official report from LAUSD (received at our IEP meeting today), where it says he is "Not Eligible for Special Ed Services." Why not? Because he is testing at or above age level in every single area. In cognitive abilities and receptive communication, in fact, he tested mostly in the 4-5 year old range. 

Let me be clear - I have NO problem with Special Ed Services. Bodie received Occupational Therapy for about 6 months, has received Physical Therapy since he was 9 months old and the TWISPP program he has been in since 18 months old is essentially a developmental preschool; all approved and paid for by the State. And he may need services in the future. So I have no issues whatsoever with special educational or developmental services. 

But the fact that Bodie doesn't qualify for services because he has completely caught up absolutely blows me away. This kid has been through 3 open-heart surgeries, 2 cardiac catheterizations, multiple intubations, 5 months of ICU hospital stays, 2 cardiac arrests, and 2 runs on bypass, not to mention that his brain has been receiving approximately 75%-85% of the oxygen it has needed since birth. Any one of these factors alone puts him at risk for developmental delays, but all of them together should put him at an unreal amount of delays. And yet he's not delayed. At all. (Apparently his "mild core weakness" is no longer considered a "delay" - good thing, since I'm pretty sure that after 3 pregnancies and a c-section I, too, have "mild core weakness"!)

People often say to me what a great job I've done with Bodie. But he's not where he's at because of me. Not even close. He's where he's at because of an incredible team of doctors, nurses, therapists, teachers, friends and family who have ALL invested in and loved this kid. On today, February 7, the first day of Congenital Heart Defect Awareness Week, I want to thank a few members of that team.

God, the ultimate healer, who continues to protect Bodie's heart and mind and guide our journey.

Dr. Starnes, Bodie's surgeon, who is known for having some of the shortest bypass times and best surgical skills around.

Dr. Kim, Bodie's amazing cardiologist, who has always known when to push Bodie and when to respect his limits, and who has always made it her goal that Bodie's CHD wouldn't define his life.

Dr. Hassouri, Bodie's pediatrician (who was actually his 2nd pediatrician, after we ditched the 1st one who took one look at Bodie as a fragile 2 month old and clearly couldn't see our son past the oxygen attached to him), who has NEVER been afraid to treat him like a typical little boy. 

Dr. Moromisato, head of the CHLA CTICU, who runs one of the best, most family-centered-care run cardiac ICU's in the country, who always got Bodie at his worst, and took care of him wisely and compassionately until he recovered. 

Dr. Rivero, the attending doctor who, after Bodie had already had 2 cardiac arrests in one day, came up with a Hail Mary idea to pace him that saved his life with moments to spare. 

Dr. Bar Cohen, Bodie's brilliant Electrophysiologist, who has never given up trying to figure out the rhythm conundrum that is Bodie, even when no else could, who made the recommendation of giving Bodie a pacemaker that improved his quality of life in ways we cannot even express.

Nurse Nicki, who empowered me as a parent to know how to recognize that my son was on the brink of death and that I could call the Rapid Response Team that saved his life.

Nutritionist Emily, who figured out how to get enough weight on our scrawny little guy's bones so that he was eligible for his Glenn surgery, finally able to get on the growth charts at 8 months old, and now be at the 75% for weight and height. Emily made sure he didn't have just enough fat to survive, but some extra for his brain to grow as well. 

The entire CHLA CTICU and CV Acute Teams, who didn't just heal our son's heart, but saved his spirit in the process, and allowed our family to be an integral player in that process.

Physical Therapist Tam, who has patiently invested countless hours to help Bodie overcome his gross motor weaknesses.

Teachers Adam, Jason, Chelsea, Kathy and the entire team at TWISPP, which is the most incredible Development Preschool on the planet, who have given Bodie confidence and the ability to push himself. This team has lovingly prepared him (and me!) for his transition to preschool.

Our family - Gigi Nancy, who spent countless hours alongside me in the hospital during Bodie's interstage admissions, making sure I stayed sane so that I could be there for my son, so that I could help his life be as normal as possible despite the completely abnormal situation we were in. Popo Bill, Gram Jan and Popo Alan, who don't give a second thought to Bodie's heart condition when they come visit, who throw him in the air, and raise him over their heads, and take him on bike rides, wagon rides and car rides. Thanks to them, Bodie lives a completely typical life. 

This team that Dusk, Sierra and I are a part of is exactly that, our "dream team," the team that is helping us achieve our dreams for our son. Every single member listed above has played an integral role in bringing us to this moment. I thank God every day that we have a team that works well together, that puts Bodie's interest first, and who all has the same goal in mind - not just to help our son survive, but to thrive

We know this battle is far from over, that Congenital Heart Disease is a lifelong battle. We don't know what this summer will bring, how tough that match will be, whether Bodie will come out as victorious as he is today. 

But today, this day, we won the match. No question. So today, we celebrate the win. 
And we High Five our Dream Team for letting us play alongside them.


  1. Way to go Bodie!! That is awesome! I'll never forget the feeling when Logan's preschool teacher told me that he was age appropriate in all areas at his conferences last year. It's incredible when you think of all that they have endured along the way.

  2. Bodie!!!! Way to go!! So so awesome! I can't wait until I can say the same for Evan <3