February comes and goes, and winter rolls on in Pittsburgh. This has been a relatively slow month for Judah and his doctors appointments since his sleep study earlier this month, but that doesn’t mean there haven’t been plenty of changes.
Early this month Judah got in for a follow up to his sleep study done back in October of last year. During that last sleep study Judah was approved to go down from the higher BiPAP setting on his vent overnight, to just CPAP. After this most recent sleep study, Judah has been approved to come off the vent completely overnight! This means for the first time since he was trached in November 2012, Judah is finally able to be completely disconnected from the ventilator 24 hours a day! It has only been one week of being completely vent-free, but so far Judah is doing fantastically.
Once we and the doctors have had a chance to further observe how Judah does overnights, and Judah has a chance to continue strengthening his lungs, next month he will meet with the combined Airway Clinic to potentially discuss the next steps – including his LTR surgery and eventual decannulation. We will also have to discuss with his cardiologist to make sure Judah’s heart is strong enough for another major surgery like the LTR, and make sure no other cardiac interventions are necessary before we can even get that far.
Shortly after the sleep study was out of the way, Judah also began his new diet of real food (meats, fruits, and vegetables) blended up and fed via his g-tube instead of being fed only formula. This change has also made a great difference for Judah, helping him to keep his food down and throw up less, and is just a far healthier selection of food for a child his age than what formula was providing.
Judah continues to grow and develop, he loves to walk from toy to toy, or from the couch to mommy and daddy, though he is still perfecting his balance. He is a joy and such a happy baby. Judah continues to increase his vocabulary using baby sign language, telling us when he wants to drive in his car, see his biggest fan (literally a ceiling fan), and can tell us when he wants “more” of something or is “all-done”. His new favorite word is “baby”, and he’s working on “daddy” and “grandpa” – two of his favorite people. Watching him figure out what he wants, and how he’s going to get it is truly amazing.
March will bring lots of doctors appointments, but with those appointments a better idea about what comes next. Hopefully March will also bring some warmer weather and possibly an end to flu season, something we are desperately waiting for so we can get Judah back out into the world. Thanks for sticking with us, letting us share with you, and as always, your love and support.