Cardiology was a tough appointment. I haven't updated til now because we were waiting for an answer from the whole team. Brocs heart has gotten worse. The leakage or regurgitation is no longer mild to moderate but more moderate to severe but the beginning stages thankfully. We were originally thinking Broc was going to be needing Open Heart Surgery this Summer but the team feels his heart can wait a couple more years . Thankfully his heart isn't severely dilated. He will be having a cardiac MRI in a couple weeks to look more closely at his heart. They will also be able to see if his heart has dilated even a little. This will give his team a lot of information going forward and what the best plan will be for Broc . His cardiologist also wanted Broc to see the Metabolism team as many things that Broc is dealing with are not all heart related or his heart is not bad enough to effect them so they are thinking once again we are missing something. Metabolism appointment will be mid May. We have been dismissed by them in the past as they had no clue so we are not holding our breathe. Broc is just one complicated little guy. May will be a busy month medically for our family.
This is Nancy. She has been doing Brocs echo since he was 8 weeks old.
Once we were done with that we moved onto the eye Dr. It was quite the ordeal to dilate his eyes. Poor buddy. The good news is his convergence insufficiency has gotten 2 points better. He still needs to wear his glasses so we will be getting him a new pair as his prescription he changed a little.
We have started doing Brocs immune therapy at home. Wow what a difference. We are able to be in our own space, on our own time and love it. I was trained at first how to do it and now I do it on my own. He hasn't had any blood pressure crashes with it which is a bonus. Those were really scary for him and us.
My health issues continue so we are trying to be as patient as we can. I had the first of my 4 surgeries on Tuesday for my venous insufficiency.
Thank you for all the love,prayers and support for our family.
