John turned 5 months old last week and is having a blast living his best life at home. 
He’s come to deeply love his play time on the floor, baby chair, oatmeal (aka super thick formula), sleeping in his bed, and playing with all sorts of toys. He is trying to eat everything he can reach and, although he still doesn’t seem to care to roll over, he has shown signs of wanting to try to crawl. 🤷🏻‍♀️

He’s had his feeding tube for 2 weeks and it’s been a huge blessing. We work hard to get him to drink one bottle a day and he’s continuing to work with his feeding therapist to ensure he keeps his oral skills. This week we started “oatmeal” and he’s definitely intrigued! 
He is up to 14.5 pounds, which puts him in the 22nd percentile. This may seem on the lower end, but after months of being <1%, his GI doctor is thrilled with his progress and growth. 
His breathing has been largely unchanged, but removing the burden of feeding has been instrumental in keeping him home. He continues on many medicines to help maintain his airway open and reduce swelling, and it is our prayer that we can continue on this trend and buy time (AT HOME) while he grows and can breathe easier. Since he doesn’t have to work so hard to eat, there’s been few times where we felt his breathing looked bad, and ZERO times since he’s been home that we considered taking him to the ER. 🤩🤩🤩🤩

I’ve stopped counting the days since we’ve been in the hospital, and have made a diligent effort to simply enjoy the time at home. Collins and John are starting to notice each other and have even entertained each other a time or two. For the time being, we are keeping our heads down, trying to enjoy each day as it comes, and constantly praying for good days for John. 🩵