Since his surgery, we have been dealing with Jaxson's lips turning blue. He has been in and out of the cardiologist's office every few months and it has been decided that it is nothing. It seems that his lips are just the last thing on his heart's list to send blood to.
He also spent a week in and out of 2 hospitals, with the scariest rash I've ever seen. He underwent multiple blood tests and a couple different diagnosis, before we found out he had purpura. He had been fighting a few different colds, and his antibodies started attacking his small blood vessels, causing them to swell. His legs and feet swelled up so bad he couldn't even stand. He was already on the path to healing before they figured out what it was.
On December 26th, 8 months post OHS, we went and saw the cardiologist. I was nervous. Something crawled into my brain and told me we would get bad news. His appointment in September told us that he had arterial leakage and the hole wasn't closed. Turns out, the hole is completely closed. His heart healed over the patch so well that the cardiologist couldn't even see it in the ECG! He is now on 6 month visits, which is a HUGE deal to us. A year ago we were going to the cardiologist every 2-4 weeks, depending on his condition. 6 months visits did not seem reachable.
So here we are, 9 1/2 months post OHS. It seems like forever ago. Jaxson is growing great. From below the 3rd percentile his whole first year to 20th percentile. What a blessing. He is so smart, it's amazing. At almost 22 months, Jaxson can speak 4-5 word sentences, learning his colors and alphabet quickly and has AMAZING manners. And he loves showing off his boo-boo belly!
So proud to be his Mom.
I will attempt, yet again, to keep this updated. More with life in general, now that Jax is fully recovered.
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