in General

Two Sons, One Home

Been a while since I wrote a health and where-we’re-at update, once again. This one is a good update!

We’ve been intensely busy these past couple weeks (I guess these past 10 months, ha). Ezra finished his ICE chemo, which sounds way more glamorous than it is. It is supposedly a very intense chemo which can have serious complications during administration, but Ezra flew through it without so much as a hiccup. If anything he was a little more tired than normal, only as his hemoglobin went down. And the cancer WAS reactive to the chemo – whew. The tumor on the side of his face has gone down considerably but is still present. The one on his neck is nearly gone. This is a good sign, and we will be doing another round of this same chemo in 10 days or 2 weeks most likely. We are still looking at heading to Memorial Sloan in NY after that (possibly end of this year).

This chemo HAS put Ezra’s counts very low, so we’ve been in the hospital 4 days a week with labs, getting blood and platelets, etc. He has shots daily at home (same as always after chemo) – which I hate giving because he knows what they are and when they are, but isn’t old enough to know WHY they are. :/

Today, Charley came home.

It’s been 191 days (192 if you count today) Charley’s been in the NICU, and today we loaded him and a bunch of gear into our car and drove him home. He’s on an oxygen tank, an apnia monitor, and has a feeding pump. He has leads on his chest to measure heart rate and breathing rate, and has a tube in his stomach for feeding. His oxygen is only at 0.2 liters, if you know anything about that – which is practically the lowest he can be on – he shouldn’t be on it longer than a month. The feedings are every few hours, for one hour, with a 10 hour continuous feed overnight. He has 5 medicines he’s on which we use a syringe and shoot through his G tube.

Anytime we take Charley anywhere (like tomorrow Robyn has appointments in Tampa for him while I have appointments in St Pete with Ezra) he’ll need all that gear with him – oxygen tank, feeding pump, and apnia monitor. He’s actually healthy and doing well, but is not yet to a point where he’s able to do all the things a normal baby would do at his age (which developmentally is about 2 and a half months at the moment). Like, y’know, breathe fully well on his own, convert air to oxygen… suck on a bottle. Minor things. 😉

The Hope For God’s Children auctions start tomorrow, and I’ve been getting a lot of questions on how it works. Essentially, a bunch of designers have created children’s stuff (clothes, accessories, etc) which they list on eBay and Etsy and people bid on. All proceeds go directly to us to help out with life and medical. We’re about to have expenses pile up with plane trips to NY and a lot of home health stuff which may not be covered with our medical coverage, so it’s good timing. I’ll write an update tomorrow as well with info on how to access the auctions, or you can check – right now nothing’s live.

Anyway, there’s probably more, but basically I’m wiped out and life is about to get even busier (how is that possible?!) so I’m signing off now to go help my beautiful wife with our kids. 😉

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  1. So happy to see the picture of Charley at HOME! What a wonderful blessing. It has been great spending many days with your wonderful son over the past 6 months. Take care and I can’t wait to see the updates!

  2. hi, i just recently had a little boy in september and i cannot imagine what yall are goin through!! but i do know one thing yalls little boy is in jesus’s arms now and has no pain i know its easier said then done! yall will miss him each and every day but you have memories and he will always be in your hearts you just have to think youll see him again one day!! and god does evverything for a reason he has a plan for your baby boy he was to precious to be on this earth! i pray each and everyday to watch over my sweet boy and keep him healthy and safe! but sometimes you have no control and stuff happens for reasons even though its hard to understand and you say to your self why did god take my baby? dont question god! he has a reason and will not put you and your wife through anything yall cant handle its not goin to be easy nevr will be easy but it will get better! i know ive never met or talked to you a day in my life i read your story and my heart just aced for your family! and my prayers are goin out to yal