We haven’t dropped off the face of the earth, contrary to popular belief. We have been busy in the last several months though. On April 19th, Jake turned ONE!!! Amazing! It certainly doesn’t feel like he’s been here that long. He’s come a LONG way in that year though. He’s officially out of casts - hopefully, if not for good, for a super long time. On March 26th he had the clubfoot surgery. After surgery, he was in soft casts for two weeks. Since he had two pins in each foot, they needed to do the cast change under anesthesia. It all went well and Dr. Dias is/was REALLY happy with how his feet look. Jake is fascinated with his feet now. He looks at them whenever he’s in his stander and when they’re out of his new AFO’s (Ankle-Foot-Orthotics). He also has KAFO’s (Knee-Ankle-Foot-Orthotics) which he wears at night.
We’ve been back to meet with the docs in Cincinnati and really didn’t get too much new news. We can do the jaw distraction surgery and it may or may not facilitate getting the trach out. That’s exactly what he told us last time.
We also decided that we need to take Jake to Shriners here in Chicago. Shriners Chicago is known for Cleft Lip/Palate repair and they also have an arthrogryposis clinic. Hopefully we’ll start making some progress with his hands now that his legs are in better shape!
We’re also going to see a gastroenterologist on Tuesday. We’re 99% sure that Jake has reflux. He’s pediatrician has put him on Prevacid but the throwing up continues. It’s been about 3 months now...not fun!
We’ll do our best to be more on top of the blog since that’s how we communicate with so many folks but feel free to drop an email or give us a call!
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