Hello you folks.
It’s been a little bit again – time to update. We finished radiation this Wednesday (4 days ago). Ezra is still throwing up once or twice a day, which should go away within the next day or two. He’s starting to get his appetite back, but the throwing up isn’t helping him a ton – he’s pretty thin. The great news is, we’ve got the next 3-4 weeks pretty much off from hospitals for him – just labs once or twice a week.
After the 3-4 weeks he’ll have another round of scans, then we’ll do 5 or 6 rounds of the 3F8 we’ve been chatting about – a week in the hospital, 3 weeks at home.
Charley is getting closer to being able to come home. Today is his 5 month birthday. He’s over 11lb now, and a little fatty. 😀 We’re trying to keep a schedule set up where we’re with him a few hours at least every other day (even in Ezra’s month off we’re in hospitals 4-5 days a week!).
There’s still a couple issues Charley is working on. He is on the minimum amount of oxygen they can give, but he’s still needing it to breathe. He also is working on taking bottles, but has 8 feedings a day, and is only able to take about 4 from a bottle right now (the other 4 being from a tube, which runs down his nose, throat, and into his stomach). The ones he IS taking he’s not able yet to take a full feed usually, although he has once or twice. The drs want to keep him in the hospital another 2-3 weeks to see if that improves. Most likely though, we will be bringing him home both on oxygen and with a tube.
If that’s the case, he would have an oxygen tank we cart around with him, along with a nose canal which will be giving him the oxygen. This is the same thing he has now. It’s POSSIBLE to have this up to a year, although we’re obviously hoping for much less!
The tube for feeding is called a g tube, and would actually be surgically implanted in his stomach. It’d be accessed via a button (yah, a button) on his stomach where we could hook up the tube to the pump for feedings. He’d still be able to wear normal shirts and such. This also would be something that can last up to a year but we hope would be less. He is eating, which is a good sign – just not enough at the moment. Charley had a hearing test done this weekend and failed in one side. This is inconclusive, but has given them reason to do a much more detailed hearing test this coming week to see if it’s anything permanent. Please pray it’s not.
I’ll let you guys know as things progress! Most likely you’ll be hearing from us next saying Charley is home. 😀
Oh – another cool thing, a charity called Hope for God’s Children (http://www.hopeforgodschildren.com) has chosen us to be their “late September beneficiary.” In late September (Sept 23 – Oct 7) they’ll be hosting a variety of auctions of artistic creations (donated by the design boutique community) of which we’ll receive all the benefits to help with life expenses. Thanks, Hope for God’s Children. We’re actually friends with some of their recent beneficiaries – a cool ministry.
Ezra’s birthday is August 31st. We’re thinking about putting together a big event at our house, as he’ll be turning 2 and also is officially in “after-care” – no evidence of disease. It’s been an intense year, and while it may not be over, it’s now into maintenance and after-care instead of disease treatment. I’ll send out an update here as we get more info, but we’re hoping to see a lot of folks there!
Until next time…