In early January we headed back to the cardiac center at CHOP for a cardiology checkup. Things look the same for Xavier's heart. The doctor decided to increase a medicine that might help his leaky valve and talked about how good he looks.
She then took a deep breath and said "I think we should repair the valve ..and I think that we should just do it at the same time as his fontan (stage 3 in his surgeries). "Okay", we said sounds good. She then followed up with "SO how does early Summer sound, around July?" I am a pro at holding my emotions (with a ton of practice) I think Nate and I were able to squeak out "If you think that's what is best...let's do it!"
So we head back in April for another ECHO and to plan things out. He will most likely be admitted a few days early, have a cath just to make sure he is still a candidate for the repair (add that to the list of worries) and then will get his repair. Our doctor thinks that given his history he should have a fairly easy recovery, but we all know that we never really know. But she guesses he should be in for about a week. It makes me very sad, anxious, excited (for it to be over) and brings on all the fears that I tucked away. BUT we know that this is what we need for Xavier to be healthy and to be the best he can be. So we except it and we move on. We plan for it and try to make his life as normal as possible leading up to it. He will only be a little over two...its going to be so hard this time cause he gets it. He is scared of the hospital and anyone is a white coat or scrubs! Poor pickle!!!
But on a happier note, Xavier and some of his heart brothers and sisters were part of a photo shoot a few weeks ago for CHOP. February is pediatric heart month and February 7-14th is CHD week. The cardiac center is doing a social media campaign to raise money for the center. They took a ton of pictures of some super cute heart babies and kiddos and they will be posted sometimes in February. I will be sure to provide links and pictures here when I get them! Our X is such a rock star!!!
Also Xavier has been doing a ton in his therapy. He can climb the stairs (hands and knees), is walking with his walker...and took a few steps to Nate, while holding onto our therapist. I missed it cause I went back to work (part time). :( He is showing progress every day...and we could not be more proud of him and all his hard work!!! We see three soon to be four different therapist a week. It can be a lot, but we hope that he will catch up in the next year or two.
Finally, we are beyond humbled and honored to be the next family for Hayden's Heart Inc. This amazing foundation was started by my dear friend Ady...who some of you might remember from some of my posts late summer. Ady lost her sweet heart warrior, Hayden in August. Hayden, Ady and their entire family are very near to my heart. I love Hayden so much and to be a part of his name sake is such an honor. They will be hosting a Zumbathon for Xavier in February. I am so excited to be a part of it and I am so grateful to Ady for all she is doing. Hayden continues to change the world...The event will be on February 23rd and will be held at the gym of the North Arlington HS in North Arlington, NJ...please message me for details!
Finally please be sure to check the blog everyday in February. I will be posting the journey's of some of the other heart warriors that I have come to know in my time as a heart mom. They will be from different places around the world, get treatment at different hospitals, have different CHD's, but we all share the same journey....they are amazing kids and I want to celebrate them....in honor of CHD awareness....SO PLEASE come and read their stories...and get inspired!!!
All our love and heart hugs...
The Ross Family