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Charley’s First Week Home

A little over a week ago we brought Charley home. We haven’t really slept much this past 8 days! We’re up every few hours with stuff. Moving Charley around the house involves loading up an oxygen tank, feeding pump (if it’s feeding time – 3 times a day for an hour each time and then overnight which needs to be changed each 4 hours), apnia monitor (which we /may/ cheat on sometimes if we’re sitting right by him, heh) and of course baby. 😀 Heading out as a family is pretty much on hold until some of those things are no longer needed by him – right now it’s just a heck of a lot of STUFF! That all to say – it IS great to have him home. We’re all finally in the same house and we’re so happy to be able to be loving on him here in his own house with us.

I remember when Ezra came home- we felt the same way. Time melted into blocks of feeding, napping, and changing, with random grocery store runs and folks stopping by bringing items or meals. A big thanks to the many many many people who are pouring help into our family this month – folks seem to be coming out of the woodwork lately to help out. The Hope for God’s Children auctions are still going on (see previous update for the link), and we’re getting phone calls and emails and meals being dropped off… lots of encouragement.

Charley has multiple appointments with his pediatrician, the neurologist (for the shunt), physical therapy, speech therapy, the pulmonologist (lungs – he has “chronic lung disease” which should go away as he ages but is because he was born so early)… now on top of Ezra’s labs, scans, chemo, etc. Ezra seems to be good; the tumor on his eye shrunk a good bit during and after chemo, but has stuck at the size it is now for a week. We’ll have scans next week and most likely start chemo again the week after.

The drs say Charley is perfectly on track for his due date (which would make him about a 3 month old now developmentally). His weight is good, all physical functions look good, and so far there are no signs of cerebral palsy – which he is high risk for because of the prematurity and the brain bleed/shunt. So… that’s great!

Well… it’s late, and I’d like to share more but I’m tired and this wound up being mostly a status update I suppose. 😀 See ya guys around!

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