This was one of the two times he actually smiled on Saturday.
This was the other.
This is Jonah's newest face. I have no idea what it means. He's definitely in the "I have very strong opinions but no words to express them" phase. It's cute but often frustrating. We've taken to calling him Tude. Fitting, dontcha think?
This would be about the time I was yelling, "Jonah, don't rub your face!" A phrase I say at least twenty times a day.
His face is looking better than this today, although the blister under his left eye is growing and getting worse. That bad place on his forehead from the rolling over incident is much better.
He had his second RSV shot today. He has to get one every 30-32 days until April, I think. This crazy shot costs like $1,400, but after some hard work by our Pediatrician's office, they got our insurance to cover it. I'm thankful he has such a caring medical staff who will work so hard for him.
On Wednesday morning we have to go to the hospital for a barium swallow. I think his GI doctor wants to make sure there's nothing more going on than just acid reflux. And he also wants to make sure that all this throwing up Jonah does is not causing throat strictures. I'm a little nervous about it. We can't feed Jonah after midnight, and we'll have to get him up early to get dressing change done before our 9:15 appointment. We are going to have one tired, hungry boy on our hands. Plus, I'm concerned he won't take the barium by bottle, and they'll have to put an NG tube down. And I'm stressing about the x-rays because we'll have to hold him down pretty tightly. I just don't want to hurt him. I'm not taking any bandages off, so I hope they don't need me to. Because I most definitely won't. I'm just sayin'.
I know all this worry doesn't help anything. I think it's just that ANY medical procedure with Jonah is scary, no matter how minor. I just don't know what to expect, and EB seems to complicate everything.
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On another note, I am so excited about Jonah's EB Auction for DebRA. Katie and my other two friends, Lauren and Leigh, are working so hard. We're already getting lots of great stuff donated (THANK YOU!), and I think we're just getting started. There is going to be a Target Gift Card giveaway for helping get the word out, but I'm not really sure how that's going to work yet, so for now, if you tell people about it and spread the word, it'll just be out of the goodness of your heart. So thanks, in advance.
To all my EB Peeps: Katie would like to raise lots of awareness (along with money) with this auction, and we would love it if you could write your story to share on the auction blog (and here too, probably) in the days leading up to the auction. It would be awesome if you could include a photo too. Could you send it to the auction email? jonahsebauction (at) gmail (dot) com.
Adrienne, Courtney, Katie, Meg, MaryBeth, Barbara... and any other EB parents that still read the blog - we'd love to share your stories. EB goes so far beyond just Jonah, and we want to make sure we make that very clear. Love you all so much. Thanks!
Speaking of my EB Peeps, please be in prayer for Samantha tonight. She's back in the hospital with a dangerous virus. They think they've caught it in time, but because she's considered "highly contagious," they've put her on the Infectious Disease Floor. You can imagine how scary that is considering her immune system is still very compromised from her BMT. You can visit her CaringBridge Site here.
As always, thank you so much for being in prayer for all the EB kids (and parents!) out there.
