Monthly Archives: June 2013

Reflections on the Journey

Today was a pretty exciting day for us! A while back, our friend, Dr. Mary Elizabeth Parker of U.R. Our Hope asked us to be on a Blog Talk Radio Show with Hari Khalsa to talk about how the journey changes once you finally have a diagnosis. We were also able to contact KXAN to help promote the radio show and also give them an update after our visit back in February.

We were scheduled to be on KXAN today, but unfortunately the station was covering the French Open and wasn’t able to have a noon newscast. They asked us to come in anyway and we taped our segment instead. It will air Monday, June 17th!! As soon as a link is available, I will post it. But again, the staff was so incredibly nice and it was a great experience.

KXAN Anchor Brian Sanders, Me, Brax, Aileen, Dr. Mary Elizabeth Parker, and Hari Khalsa

KXAN Anchor Brian Sanders, Me, Brax, Aileen, Dr. Mary Elizabeth Parker, and Hari Khalsa

We did go on with the radio show as planned though! Hari Khalsa, The Healthcare Whisperer, is a Nurse Practitioner and Patient Healthcare advocate and her radio show features patient stories about navigating the healthcare system. In the past, she’s interviewed some of the other families in U.R. Our Hope about their undiagnosed journey and of course Dr. Parker about the organization in general. Today’s show was about how that journey changes once you finally have a diagnosis. Myself and another mom I’ve met through U.R. Our Hope had a chance to share our stories and what the journey has been like for us since getting our diagnosis. This was such a wonderful opportunity and I’m so grateful to Hari for having us on and to Mary Elizabeth for thinking about us to be on the show.

You can listen to the show in it’s entirety by clicking this link or listening below! The show is an hour long, so you can definitely bookmark it and come back, or save it so you can listen while you’re stuck in traffic.

Listen here!!


Filed under Life, Special Needs Child

Matters of the Heart

First, if you didn’t happen to catch the update I posted at the end of the last post, I’m sorry for leaving you hanging! All went well with Brax that day and he was back to himself in no time. I’ve also since that day received the results back from all the MRIs he had done.  His spinal MRIs all came back unremarkable, which is GREAT news! They did note scoliosis, which we already knew, but other than that everything looked good. There are no vertebral abnormalities and he does not have a tethered spinal cord. Yay! His Brain MRI showed a few changes, but I’m not quite sure about their significance yet.  The neurologist claims the report is exactly the same as his first, but it’s not.  We see him at the end of the month and I’ll talk to him more about it and see exactly what’s going on.  I don’t think it’s a cause for extreme worry or anything, but just need clarification.

Now that we have that out of the way…

Last week we also saw our cardiologist for Braxton’s 6-month check in.  Braxton has the Bicuspid Aortic Valve and Dilated Aortic Root so he needs to be followed closely to monitor any changes.  Overall, it was a pretty good visit.  Braxton is still stable and for having the abnormality, his heart is functioning exactly as it should. Always nice to get good news!!

Also, for the first time in 2 years, the doctor finally addressed my questions about what might happen long term.  The biggest concern is the aortic root.  That is the base of the largest vein in our body which leads to our heart and Braxton’s is quite enlarged.  Doc explained that his aortic root is just millimeters away from being comparable to the average adult.  The root has been enlarged since birth and it continues to get bigger, but is growing proportionately with him as he gets older so the doctor is not overly concerned just yet.  He wants to continue monitoring it closely because if it gets too enlarged, then we have serious issues.  If not monitored, the root could actually balloon up and burst, and if that happened there is really nothing that can be done.  He explained that even if that happened and the person was on the operating table with a surgeon right there nothing could be done to save the patient!  Pretty scary stuff.  Now I know why he never told me before!!

Now that we have a diagnosis and I’m in a place of acceptance, I think he could see that in my face and decided it was ok to tell me.  Admittedly, my heart skipped a beat as we talked, but I realized we were talking worst case scenario and we were far from that.  This is a situation we wouldn’t necessarily have to worry about until the root was double the size it is now, according to the doctor.  This is also something that would definitely affect his ability to play sports and other things as he gets older depending on the size of it as he grows.  Just further reason that he needs to go in for routine monitoring.

While, it is a little nerve-wracking to sit and listen to all of this, I’m grateful that he took the time to explain everything, and also ensure me that everything is ok right now.  Knowing about things like this now help me to prepare for later.  If something happened later it would be much more of a shock, but now that it’s in the back of mind I won’t be so blindsided.

As always, I remain hopeful.  Braxton is doing so well right now. He is truly thriving and making so much progress. The doctor was very pleased with our results and happy with the progress Braxton has made.  He reassured us that there is absolutely nothing to worry about right now with regard to Braxton’s heart.  I’m thankful for a doctor who is proactive and will continue to closely monitor our little man.  It’s always nice to find a professional who truly has the child’s best interests at heart.  We have been so blessed to have so many wonderful doctors and therapists always going above and beyond our expectations to take care of Braxton.


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Filed under Life, Special Needs Child