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Thursday, January 28, 2010
I want to puke. D keeps telling me to stop thinking about it, but I can't. I try, but like I told him, I don't go to work (outside the home.) I don't have other distractions. I live and breath our children. So while I might try not to think about it, I can't help it. Every diaper change is a reminder. Every glance at E's face elicits a visceral response in me.

Last week we went to Children's Hospital to finally see a GI specialist. Her name is Stephanie and she's really nice. And she's a mom, which makes a huge difference, in my opinion.

There is definitely something wrong with E. Stephanie listened to and transcribed every word we said with a knowing nod. She was understanding, patient and knowledgeable. She confirmed that our suspicions were indeed accurate and she ordered a litany of tests, starting easy (collect us some poop, please) and slowly escalating to frightening (endoscopy/colonoscopy under general anesthesia.)

We walked out of the office dizzy with information. I fought back tears. I wanted to cry for a million reasons. I was scared and sad. I felt guilty that it'd taken us this long to get to where we were, and validated that my suspicions had been correct...which brought me back to the suffocating feelings of guilt regarding our inaction. And part of me was relieved that Stephanie seemed to know more than I did, that I didn't have to go home and google the crap out of everything in case there was something she didn't think of or didn't know about, which I've read is often the case with some of these GI issues.

We took the elevator back downstairs and D took E for his xray. He said it was rough. There's a guy whose only job is to help restrain scared children. Which E was. He was a scared child who needed to be restrained by his father and a stranger.

As D waited for the valet to return our car (I just about had a nervous breakdown backing out of the 2nd parking lot we pulled into and ended up valeting - which I HIGHLY recommend to anyone who ever goes to the CH in Aurora because the parking lots are a nightmare!) E pooped. Now, I'm going to back up a minute. I mentioned that we had gone to see an allergist and that she put E on an elimination diet. It had been three weeks since we'd started the diet and the day before we head over to CH, E has two perfect poops. The stuff dreams are made of. The kind of poops that convinced D that cloth diapering would not be gross. And the morning of our appointment, E had another perfect poop. So back to the valet...D is waiting for the car and E, B and I are watching the super cool ball track. E poops and I freak out. I text D and he comes running across the lobby, scoops E up and grabs the collection vial from my hand. D later laments that his turn with a perfect poop was besmirched by the fact that he had to smoosh it into a plastic vial in a public restroom with a diaper bag that had NO WIPES.

The xray came back normal. The poop test came back normal. Well, the things they were able to test for came back normal. Turns out that the poop was too perfect to test for a few things. Which is why I had to catch his poop in a plastic diaper - turns out that a g diaper without the insert works much better than saran wrap inside a regular diaper - freeze it and run it down to the hospital this afternoon. The nurse was a bitch. But I got frozen poop smooshed into a plastic cup without making too much of a mess and bribed E for the maybe the second time in his whole life because by the time all was said and done, I was exhausted. Poor B was grumpy from an interrupted nap, E was stressed from being at the hospital again, and I was tired from sleep-deprivation and anxiety and everything else.

We got back for a blood test and another poop test next week. And if nothing comes back from those, we go in for the endoscopy/colonoscopy 2 weeks after that. When Stephanie called yesterday to discuss the lab results, she advised me to schedule the surgery. I spent 25 minutes pummeling her with questions. Basically, she suspects a malabsorption issue but has to rule out everything from Celiac to cystic fibrosis. Stephanie reassured us that E probably doesn't have any of the super scary and serious diseases on the list, since he's a generally happy and healthy child who meets all developmental milestones at or ahead of schedule. But she also can't promise that we'll find something with the fecal or blood tests. So after 25 minutes of questions and answers, I asked her what she knew was coming..."If my son was your son, would you do the endoscopy/colonoscopy if none of the other tests come back positive?" And she said that it's an unfair question. She does this every day, so she doesn't have the same fears and anxiety around the surgery as we would. But yes, she thinks it's imperative that we figure out what is wrong with E. That he's spent 2.5 years not absorbing nutrients, not growing to his potential and that we've come this far and we care this much and that if we catch it now, then maybe the damage can be mitigated.

D and I talked about it last night and we agreed that if none of the other tests give us any information, then we'll go ahead with the surgery. So...yeah. I wish I had a funny post for you guys, but I don't. I wish I could be all inspirational and positive-thinking, but I always have to wallow a little bit first. I've learned to honor my sadness so that I can move past it. So for now, I'm a miserable mess.

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