Monday, July 20, 2015

Boston Bound

As the parent of a medically fragile child, I feel like the battle to advocate for your child never really ends, even when it's not at the forefront of your mind. This is one of those times.

You may have heard that the kids and I are headed to Boston this weekend and it's true. We're headed to Boston Children's, to have some specialized testing done on Bodie, and then heading from there to South Carolina, to catch up on some much needed time with some very, very dear friends!

I have had several people ask me why we're flying all the way to Boston to have Bodie tested, when he's doing so well. And if it means we're leaving CHLA or are somehow unhappy with our team there. And those are totally legit questions. He IS doing well. Really, really well. Physically, we're on good even ground. He's on a 3 month visit schedule with his cardiologist and weaning down nicely off of his Sildenafil. He's even in a good space electrically, with less EAT than we saw a few months ago. Things are nice right now.

But he's headed into kindergarten, and, for a lot of complex chders, the school age years are where the rubber meets the road, where the physical issues fade to the background (for a time, at least), while the emotional and intellectual issues take the focus. Sisters by Heart recently shared a wonderful article written about this very subject, which you can read here and which gives you a really good idea of some of the things Bodie is up against. 

But for us, it's more than a risk. Bodie is such a sweet kid - and so stinking smart. And very, very funny. We love him so much. But, we have seen things with Bodie that are red flags for us - impulsiveness, anxiety, low frustration tolerance, and on and on. Honestly, all of what we see in Bodie could be normal 5-year old boy stuff. But all of it also lines right up with what you expect to see in children who have been through what Bodie has been through. Heck, it's stuff you expect to see in kids who have been through less than Bodie.

Luckily for us, and many heart families like us, programs are sprouting up across the country that deal with exactly this - the neurological and emotional impact of complex congenital heart disease. There is a growing body of evidence suggesting that the complexities of children with complex congenital heart defects are often missed by traditional therapists, so the focus is amazing. Programs that provide evaluation, and support, and resources just for kids like Bodie! It's exciting and wonderful that these resources exist. 

Unfortunately, we don't have any such programs out here near us yet. So, we have to travel to have Bodie evaluated. And, since we have to travel anyway, we figured we'd go to the best, which is Boston Children's. 

So, Bodie is going to be evaluated by BCH's Cardiac Neurodevelopmental Program next week, which provides comprehensive, evidence-based neurodevelopmental assessment, second opinions, consultation and intervention services by a team of specialists, all of whom are focused solely on cardiac kids like Bodie. 

We're really excited to hear what they have to say, and, more than anything, to walk away with some concrete suggestions of areas they expect Bodie to struggle in school and HOW specifically we can help him, how we can discipline him effectively, and how he can best thrive. How great is that???

And why are we doing this now? Partly because right at the cusp of his educational career made the most sense. Why not get ahead of the ball and set him up early for success, rather than waiting until he's been struggling for a few years? And, honestly, partly because, thanks to Dusk's heart attack, we've already hit our out of pocket insurance maximum for the year, so why not? We have to take the good where we can get it! Ha!

We leave Saturday and we appreciate prayers for travel mercies and sanity for me (I am traveling alone with the kids while Dusk mans the fort back home!), that Bodie is cooperative during testing (please oh please oh please) and that we get some answers for our little man! We have worked so hard to get Bodie to this point. We've fought for his life - now it's our turn to help him make that life the best it can be. 



  1. This is interesting to me. I am a traveling preschool special ed teacher. I go into typical preschools and daycares. I have had several kiddos with chronic conditions. One kiddo has anxiety that we have worked through during specific events. Our preschool department is always looking to reach out to service more students. This is an area I think worth exploring!

  2. Hi Amy: I have been following your blog (I think I originally found it through Stacey Linh and Sisters at Heart) and am in awe of your family's continued strength and perseverance over the last few years! I live in Boston with my husband Brian and our three kids Haven (5), Ronan (3) and Tommy (2). Our daughter Haven was born with HRHS/Pulmonary Atresia and is also a single ventricle kiddo. We were SO lucky to be in Boston and to have access to the Cardiac Neurodevelopmental Program -- and in our case, Dr. Anjali Sadhwani was a HUGE help to us as we prepared Haven for pre-school and kindergarten after her three open hearts. Needless to say, it's a wonderful program and I think you'll find the evaluations they conduct and the support they provide to be extremely helpful as you move out of crisis mode and into some kind of normalcy as Bodie approaches school age -- which is amazing in itself. Very excited to hear you are coming to Boston! Not to mention South Carolina -- which is just ironic because one of our closest heart family friends lives in Charleston ( and for a second there -- I thought you knew Elisabeth and her son George! It's a small world -- especially the CHD world we all live in -- so you never know. Anyway -- would love to talk with you while you are here or give you my own insight to how the Neuro/Psych program was helpful. Love seeing pics of Bodie and how well he is doing after all you have been through. You are an incredible family! Lots of heart hugs from our family to yours, Molly, Brian, Haven, Ronan and Tommy

  3. Amy,
    Can you email me? I would like more information about this program. My son has had 2 open heart surgeries because of his chd's and is just gearing up to start kindergarten for a second time. He has so many behavioral issues that this past year was very difficult on all of us. Thank you for posting this, maybe it will be a part of an answer to some of our questions.