You go into with the best of intentions. You think you know what you are getting yourself into, and you dive in.
Then, after a bit, you look around and wondering what the hell you got yourself into. Are you doing it right? Are you giving too much, too little? Surprises come up, you ask the best experts you know, you change what you are doing and hope for the very best.
Last week, while attending the BlogHer'12 Conference in NYC (more on that trip on another day), I got a call from the local children's hospital - we've been expecting Emerson's recent scope results for his eosinophilic esophagitis.
I took the call, ducking out of the iphonography session, to speak to the nurse.
His eosinophilic cells more than quintupled.
There's simply no other way to put it: I feel fucked.
He's already avoiding all the foods he's allergic to, still taking his god-awfully-expensive special formula. And the numbers took a massive jump, what the hell?
After going through all his records (in the hallway, where I barely had reception) and discussing his behaviors (still wakes up at least three times a night, screaming bloody murder plus a whole gamut of other stuff, like refusing to talk even tho he can, punk), the nurse let me go so she could talk to the doctor.
Later that evening, she called back letting me know that the doctor didn't want Emery to have any food for the next three-or-so weeks (just special formula), until we came in for an office appointment.
Hahahaha, yeah, right.
This after nearly a year of hissy fights and fights and stop chipmunking your food in your cheek and swallow and here, try this and mmmmmm, doesn't that taste good she wants us to cold-turkey him off food?
Again. Fucked.
Tomorrow I need to call them back, because this whole don't feed the child anything business simply isn't working - his face is breaking out, he's screaming, miserable, and constantly signing for "more chocolate chips."
This whole parenting thing isn't easy. Neither is gardening, really.
But sometimes you get to step back, take a look and realize: you're doing best job you can - and look! Everything is blooming.
7 comments:
I'm so sorry. You need a break from all this craziness! I hope they let you keep feeding him.
oh, honey. love you.
That picture. I want to zerbert that tummy.
Sorry everything is so rough. :(
You are the strongest and most amazing mother. This too shall pass? Nah...I really got nothin'. This just sucks. But you're doing a great job hanging in there and you've expressed this mess beautifully. Hugs.
Oh no! I hope he gets to see the dr soon -- I can't imagine no food will work for long... (You know that from your own experience!)
I'm sorry this is happening. I can't even begin to comprehend how you get through it. Sending lots of love to you and to Emerson.
Hi! Ironically, I heard about your blog through a wonderful person I met last night at a dr's office. She encouraged me to read your blog as it sounded like our children had some things in common. I hope you don't mind! My son is going on 11 months, and for 11 months we've done the "puke all the time, walk around with burp cloths attached to your clothes, and put bibs on the size of the child dance" . He's been hospitalized twice (although that really pissed the drs off when they couldn't figure out what was going on) for swelling in his toes and fingers, eye lids, breaking out in rashes and diarrhea that burned his bottom and took skin off and made him bleed. We had him on an H2 then he was put on a PPI, then back to the H2 we went bc he wouldn't keep the PPI down enough. We have run the gamet on formulas, just kicked Neocate to the curb after building up a tolerance and reacting and are trialing EleCare with no food. He's still reacting to this, but not as bad. Even then I'm thinking...hey y'all, are you all idiots (drs)? Something is going on. Plus he bounces around on weight. Right now we've gotten him up to 16 pounds 11 ounces and 27 in long!! We're looking into Atlanta, Greenville, or Cincinatti to try to get him in. I would love to stay in touch, but I'm very sorry your family is having to walk this path too...or jump, since we let him spit up enough then go around and spot treat the carpet lol.
Sarah Johnson
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