Wednesday, January 23, 2008

broccoli trial

Sunday marked the end of our broccoli food trial. It took 3.5 weeks total, the first week being wasted with L not eating any of the chopped broccoli I presented with his peas. Okay, new tactic, I started mixing the little pieces of broccoli into baby food (mostly sweet potatoes and squash, occasionally peas or carrots) and that worked. It was a ridiculous process, made slightly easier when I brought out my Magic Bullet blender to finely chop the broccoli. Glad that's over. But the bright side was the food trial forced me to bring L to the table for lunch and dinner each day, I'm rarely so diligent otherwise. We also moved L out of the high chair and into a booster at our dining table, so he's a happy camper (if only for a few minutes at a time). But because I wanted to make sure the bits of broccoli made it onto the spoon and into his mouth, I had to feed him myself, making my meals, well, more difficult. Again, glad that's over, if only for a few days.

This week is our week off of new foods. I've been meaning to make baked fries but haven't managed that yet. Today perhaps? I doubt it. Then next week we'll do a beef trial. My plan is to brown ground beef and hide it in baby food as well. (Don't ask me what good approved foods are if L won't eat them except hidden in sweet potatoes??!!)

Oh, and we see the GI doc on Friday, so we'll test L's broccoli poop card then.

Friday, January 11, 2008

random thoughts

We went to the park today and met up with our friends K and her sons J (almost 3) and W (6 months). It was great so we stayed a long time and I could tell L was getting hungry, so I asked if he was hungry and patted my belly (our sign for hunger) and he patted his belly and then lay himself down on the sand!!! (Right next to the slide!) What's a mom to do? I got out his bottle and put it in his mouth. And I sort of laughed to my friend that I've had to get over my embarrassment in these moments. I can be embarrassed or I can feed my son! If someone wants to inquire as to why my looks-like-a-3-year-old is drinking a bottle, lying down, in the middle of the sand, do I have a story to tell?! In my head I'm almost daring them to ask so I can justify this crazy scene.

Unrelated, props to ABC News for shining a light on EE last night! They did a story on a child with EE whose insurance doesn't cover her prescription formula (she drinks Elecare, a different brand but same thing as L's Neocate) that costs $1200/month. They are in NY, where we'd heard the state had a law forcing insurance to cover it. Turns out, insurance only has to cover $2500/year, which doesn't help this family much. Since Jan. 1, 2007, Arizona requires insurance to cover at least 75%. Yea, AZ Legislature and Gov. Napolitano, we thank you! But it's a real problem and needs national attention. Thanks ABC!

I totally related to the video. The girl is 3 years old and has very few approved foods (they didn't specify what or how many) and so gets all her nutrition from the formula--same as L. (In other words, she can't live without it, but her insurance calls it a food supplement rather than a medication and therefore does not cover it!) And they showed her with her Avent bottle (same as L) and lying down to drink it (same as L!, though she was on the sofa, L drinks on the floor on his changing pad, not sure I'd want the whole world to see that LOL). So while I wouldn't call it enjoyable to watch, it was a unique opportunity to see that others live like we do. Tearjerker.

At the moment, you can go to and search "formula" and the video is listed on the right--I don't know how long that will be the case.

Wednesday, January 2, 2008

New Year's resolutions

I have several "new year's resolutions," though I hate to call them that cuz we all know how successful those are. Anyway, I have some goals I want to strive toward in the new year, one of which is to always be in food trial mode. (I can't always be in a food trial, since I want to give a week between foods in case there's been bleeding, but I can always be "in the zone.") Because the only way L will ever get additional approved foods is if I'm providing him with that opportunity, no matter how frustrating or inconvenient for me, and there's always some excuse or another and it's tough, this is a two-year-old we're talking about! But the potential reward is great. So tonight, I'm putting him in the high chair (yes, I know, I'm moving him to the booster asap!) and serving chopped broccoli with his peas.

Another of my resolutions is to journal or blog once a week (ha ha, this entry counts for this week).

We were out of L's food

We get L's formula (Neocate Jr.) from a middleman that works with our insurance called Apria. They suck. Just kidding, what sucks is getting our son's food through the mail (or UPS or Golden State or whatever!). Anyway, the shipment that was supposed to arrive on 12/29 didn't and since that was a Saturday, we were pretty much screwed (on weekdays, we can go to Children's Hospital and they'll give us a can to help us out). We had a can in our pantry (and how it came to be there is a long story I really don't want to go into) that had sat in our car for a week during our vacation--not ideal, but we cracked that open lest he starve to death (of course I'm exaggerating, he could have drunk rice milk for 24 hours). All of this to say how much it really sucks that my son's main source of nutrition cannot be found in stores.

Holiday Roundup

The Christmas party at L's playgroup turned out to be very difficult. Unlike normal weeks where snacks are at the table and I can usually keep L away without incident, at the party there were two additional tables of food and L is now tall enough to see what's on the table and grab for it. Ugh! So that was a constant struggle, I had to always be aware of where he was relative to the table, and run (and yell, as need be) across the room to stop him from grabbing, I moved some foods farther from the edge of the table etc.

So there was that, but also food was everywhere. I don't know who let their child bring a plate of food into the center of the play area (on the floor). I was unaware...until I saw L with a chicken nugget in his hand--and there was a bite out of it! So I run over and sweep my finger through his mouth (nothing was there) and then I see the bit of nugget on the floor, so he didn't eat it, but I don't know if he or someone else was the one who bit the piece off (it wouldn't be the first time L tasted something and spat it out). Ugh.

I just feel like it's getting harder instead of easier.