Waiting and Growing

Not a ton of change this week! 

Tony has consistently gained weight the past two weeks for the first time, actual weight and not water weight. He hit 6 kg Thursday, that's about 13 lbs 4 oz. He also took his entire bottle for the first time yesterday! He gets 73ml every 3 hours through his g tube. If he takes a bottle, whatever he doesn't drink from the bottle we put the rest through his tube. So this was the first time in his life that he didn't have to use a tube to eat, that's a big deal! 

Other than that we increased his trigger trials to 6am to 6pm and he's tolerating that. He was also signed off on by the endocrinologists and the cardiologists. He no longer has adrenal insufficiency, meaning his body should be able to react to normal amounts of stress now without needing steroids. They also no longer have to watch the device that they used to close his PDA, it should be set in with no risk of it migrating. His pulmonary hypertension has resolved (at least for now), which is huge. He'll still need follow up echocardiograms because there is an anomaly on his tricuspid valve. It's not expected to cause any issues though. The weather wasn't nice enough to go outside, maybe in a couple of weeks. Just waiting and living life as normal as we can for now. 

Praying for patience in the waiting and for the other babies like Tony. The things you hear and see can bring you down even on his good days. Hoping for steady progress in the coming weeks!

Fredy doesn't believe it, but Tony has started to help me turn the pages every night during story time! >


Tony had to get an IV for his adrenal insufficiency test, but he at least made the best of it and used the "nono" to whack his toys >


Everyone can't get over how excited Tony gets when he sees his bottle! >



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