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| As rare as a unicorn... |
Don't worry, he's still impossible to please. The only thing that makes him smile like this is the ceiling in his room. I know you're probably assuming that there is a painting of a cute little ducky, or maybe a few bright colorful lights up there, but you would be wrong on all counts. It seems that the only thing that brings my son joy is plain white ceiling tiles. There is nothing remarkable about them in any way, but that doesn't stop him from staring at it for hours and smiling occasionally... we're very concerned.
On to real updates: Ezekiel's EEG from a couple weeks ago showed no abnormalities and there has been no more "seizure-like" activity. They can't qualify his "event" as a seizure because he wasn't hooked up to any brain monitoring at the time. That's just a technicality, though, what matters is that it hasn't happened again and we're hoping that will continue to be the case.
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| Ezekiel imitating the grand master |
Zeke hit a bit of a landmark since last we talked too: his 100th day of life! To celebrate the occasion, his nurses decorated his room with some Star Wars themed fun!
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| His feeding machine is labeled as "Force Fuel." Dad approves. |
In other exciting news, there has been a lot of talk about Ezekiel's path to discharge. We've started working with hospital staff to get all the affairs in order so we can be ready to go when Ezekiel is. This includes scheduling home nursing, obtaining home healthcare equipment (ventilation and dialysis) and training Jenny and I to use all this stuff. We're still a couple months from discharge, so we have some time, but it's awesome to be actively working toward this goal. We've met with home nursing companies, been in contact with home equipment providers, and even had our first official training class.
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| I had to add a scowl, just in case the smile above made you wonder if you were on the right page. |
The prospect of taking Ezekiel home is still really hard to picture. He has come so far in just 3 months, it is crazy. After everything he's been through, he's still doing age appropriate things when everyone was expecting him to be delayed. It's just more proof that this little dude will not be held down by anything. This is also another testament to the amazing staff at AFCH and Meriter. I can't thank his doctors, nurses, therapists, aid workers, and everyone else enough for everything they have done for our son. I know I've mentioned how touched we've been by how genuinely the staff cares for Ezekiel and that feeling has not subsided in the slightest. It struck me then and continues to strike me, even after all this time. They didn't just save him, they helped him thrive... We will never be able to repay them for this gift.
Sleepy time!
Caleb
Caleb
