Cardiology, Orthotics and SDR Anniversary OH MY!

We have had a busy month as always. Yesterday marked 5 years since SDR! This week Brendan had his cardiology appointment to check on his enlarged aorta and then he was casted for new leg braces as well as a back brace for his scoliosis. We also finally picked up his new glasses because I broke his one week old pair the very first day we had his power wheel chair in the house. OOPS


I can't even believe it has been 5 years. So many memories come flooding into my brain. It was far from easy and I had my 6 week old baby to care for but we did it! When I think about everything that we have done since it seems a life time away but in other aspects it feels like yesterday. Time is weird like that.

Recovering from SDR 5 years ago today:

Brendan had to have his heart checked again. I was worried this time but not entirely sure why. Maybe because we just got horrendous news regarding his scoliosis. Maybe it is how I prepare myself in case the results are not what I want to hear. Apparently it is my coping mechanism so I can get through that very moment the doctor is spewing out information that I don't want to hear regarding my child. So I was anxious for a few days prior, however, there was no need because we got amazing results. His heart is functioning beautifully. We no longer need to even think about his device that was placed in his heart at age 5 to close 3 (of course not 1 but 3) holes in his heart. It is healed and not leaking and working perfectly. The last few years we have been watching an enlarged Aorta. The doctor had kept this lovely information to himself for years which thinking back I am completely okay with! Although when he told me I was knocked down like a ton of bricks. I didn't see it coming. We already had dealt with some leaking issues around his device and finally that appointment had been good news. No leaks were seen and it was healing completely. I wasn't prepared for a different type of heart defect especially one involving his aorta. Seriously kid?! This one hit me hard because my father had his aortic valve replaced and I figured it had to be genetic or something and visions of open heart surgery danced in my head. Thankfully as the years have gone on his enlarged aorta doesn't seem to be a problem. His just happens to not fit into the 'normal' range which doesn't surprise me because we are talking about Brendan here. Nothing has been normal since the day he was born. Once he is an adult the size of his aortic root won't even be considered enlarged which is less than a year away so we can all breathe again. He doesn't even have to go back for 3 years! This is the longest we have been able to avoid the cardiologist. We are both very happy. He really doesn't enjoy this appointment but rocked it like never before.

Very happy to be leaving that appointment:

At least he got to go see one of his favorite people after his most hated appointment, Katie. Katie is his orthotist. She makes his leg braces and whatever else his body needs. She has been working with him for 5 years now after his previous orthotist suddenly died after having an aneurysm. Brendan got to talk her ear off and get casted and measured for his new back brace. He enjoyed every second. She even gave him a tour of their brace shop and he gave the secretary's his phone number just in case they were hiring for the Summer! They have known him since he was a few years old and love him. Brendan has that way with people.

Happy at this appointment:

So we have had a busy few months but we got a lot checked off of our list. We received some bad news and some good news and that is how life works.

I think we got all of his appointments checked off for a while. Next week I get to endure a multiple hour allergy appointment with my 5 year old so it actually never ends for me!