April 19

With the sad exception of the Boston Marathon bombings this week, things are going great.  I've been making great progress on getting the house "back" to clean and organized, and focusing on getting the family meals back to a healthy menu.  My messy bedroom is one of the last holdouts of hopeless disaster; and I looked at the portable crib next to our bed, taking up a lot of space, and thought "we haven't used it in months. She sleeps in her own room now."  Famous last words.  I decided to start tackling the mess by taking it down the next day, only to have her suddenly need to sleep there for a week. 

My facebook status on Friday, April 19th read:

What a full and busy week this has been... flags in Utah have been half mast all week, and Boston, Texas, we love you-- you have both been all over the news here in the West. It sounds so tiny in comparison, but Justin has been enduring a terrible ordeal regarding his cell phone--he was the victim of a scam on both the sale and purchase of his phone, it's been kind of awful actually, but on the lighter side I've enjoyed making very healthy meals for the family all week, tried making my own home-ground wheat bread for the first time, and loving trying lots of whole juicing for my own meals (this morning my juice was 1.5 apples, 2 oranges, organic power greens, water and a frozen mix of pineapple, mango, strawberry and blueberry), and last night made sticky rice with orange chicken, fresh oranges and steamed asparagus. I was so proud of my first attempt at sticky rice, until Audrey got it stuck in her throat and couldn't get it up or down. She was occasionally throwing up her own saliva but no food, so last night she slept in her bassinette beside my bed for the first time in months, waking up in the night gagging and gasping. She couldn't tolerate her feeding pump, her reflux was really bothering her, so I kept turning down her flow rate until finally I had to turn it off completely. The good news is, this morning she had cleared it! She begged for cheerios and water and ate quite a few without incident. I am thinking there is no way we are going to make it another two weeks before going back to Boston, without another dilation. She just needs to eat by mouth, and we can't let it stricture down to the tiny hole she had like last week. I want to try to get a balloon dilation here in Utah to get us through this interim time, and plan on the more complex procedure when we get there. Tried to call Dr Manfredi's office in Boston this morning, and was surprised to get an answering service, so I found out about the big shootout, city-wide lockdown and manhunt there in Boston. He usually does his surgeries in the OR today, so this is probably difficult for many patients today. Thinking of our friends back East and sending prayers for your safety and comfort.

Update:
"I've discovered since posting this that both toddlers are also fighting a digestive virus, so that must be causing Audrey's extra reflux. I tried her pump again during nap and she had both gagging and diarrhea. Sorry for too much information, haha! But it was a relief to know this wasn't all just her esophagus acting up. Thanks for the caring words everyone."

I can't overstate how much it means to have the support and feedback of our family and friends, and the experienced comments of other EA moms, when surprises and questions like this pop up.  Here are some of the sweet comments that people made on this post:

Carolyn T:  Little Audrey has been such a little trooper... She has a tremendous role to play on this planet... we won't know what for many years... but she's fought the battle to stay here with wonderful parents willing to fight along side her. Sorry to hear things aren't going so well. Just keep saying " every thing will be o.k." !! And eventually ... in our loving Fathers own due time and a little prayer power and his help... it will be!! Hang in there and keep praying!!

Amy P:  Dr. Manfredi is on vacation this week as it is spring break in Boston. Jennings is gone as well he left the middle of last week for Costa Rica. They both should be back next week.  [My 12 year old EA/TEF daughter] gets rice stuck whenever she eats it, she gags, gasps and throws up saliva all the time at night and doesn't need dilations, it may be just the type of food she ate. when things are stuck she can't even get water down. Love ya

Melissa R: I am so glad you two are out of Boston, It was so hard having to listen to the news with the knowledge that you were safe at home. If you had been there I know I would have become a nervous wreck.

Dana E:  I'm glad you're not in Boston right now, Susie! I know how good you and Audrey are at making everything an adventure, so you+Boston at this point in time would be a bad combination! Love you. Hoping things settle down in Boston SOON. It's been a crazy week for them.


Stacy K: [My EA/TEF toddler] had trouble with rice a few nights ago as well 

Melissa M: That's really very interesting that she had such a tough time with the rice.... My [non-EA] dad has an esophageal stricture, and he ALWAYS gets rice stuck in his throat (also chicken and anything even a little bit dry). (He usually avoids it, but once in a while he just wants to go for it, I guess....) Anyway, he ends up spending nearly an hour in the bathroom trying to cough it out. I wonder what it is about rice that would cause that.... I hope you get that little girl's woes figured out, and quick!