Thursday, September 17, 2009

So long, Elecare...hello, butter!

When Asher was diagnosed with Eosinophilic Gastroenteritis, an allergy disorder, 3 1/2 years ago, this is what I longed to see. To have some sort of crystal ball so I'd know just what food allergies he would "outgrow."

Throughout Asher's decline, diagnosis and medical care, we've been tremendously lucky. We've been blessed with smart and caring doctors in Boston and Phoenix. He loved his vanilla Elecare, a formula made of amino acids, the building blocks of all food. While some kids have to get feeding tubes to tolerate the stuff because it doesn't taste that good, Asher would drink cups of it (which was good because he had to drink 6-7 cups a day to avoid getting a feeding tube).

But, his Elecare was expensive ($600 a month). I'll spare you the tirade of trying to hold insurance companies accountable when they broke an Arizona law that mandated that insurance companies pay 75% of the price of formula for kids with Asher's disorder (I'm looking squarely at you, Arizona Blue Cross/Blue Shield).

Last year, about this time, we did a soy trial, and Asher passed, which means he didn't throw up, get hives, have diarrhea or complain about an upset stomach. This meant that provided Asher kept up with his growth, we could drop the Elecare, which he has done (way to grow, Asher!).

But, Elecare has been my crutch. When Asher wasn't gaining weight and refused to eat what I gave him and had such a limited diet, I felt like a better mom when I gave Asher the caloric-dense beverage. We haven't used it for 9 months now, and I'm finding that I'm just now ready to give it away. (Anyone want free Elecare?)

For a couple months, I've been feeling like it was time to do the last food trial I'm comfortable not doing in a doctor's office--dairy. (For the record, Asher's reactions to peanuts and eggs are so volatile and his lab work predicts that he probably won't outgrow these allergies, so I'm very reluctant to try those at home or, er, ever.)

This past week, I made Kirstin's delicious sugar cookies, but I used real butter instead of our usual Smart Balance substitute (oh my goodness! I forgot how delicious butter-based cookies are!). Every day, Asher gets 2 sugar cookies to see if there's a threshold for the reaction.

And, so far, so good! He doesn't show any signs of gastrointestinal distress, which is always my primary concern and will stop a food trial. He does get a slight red rash around his mouth, but once I wash his face, it goes away. And, if that's all that happens, I'm comfortable with calling the trial a success in another week.

I like to think this disorder is behind us, but I've been on enough support group listserves to know that this may not be the case. Still, I remember as a member of those listserves and as a more participant of our local EOS support group, wishing that I heard more success stories.
I suspect that there are more like mine, but as our kids get better, we forget walking up and down store isles in tears, wondering what we could make for dinner, or missing trips because packing all that food was just too hard, or sitting at the computer, crying as we read other families sharing their stories.
We just get busy, and truthfully, I feel a little guilty when I think of the families who started this journey around the time we did. We met some wonderful, generous people (you can see them and Asher in the video below, which was done as a fundraiser for this great site). It's hard to think about how as they lost foods, we gained more. But, I've been thinking that as someone with a success story, I owe it to these people to share our story.

"Mom, I made a pretty picture,"

said Luke with a black Sharpie in hand and a poopy diaper around his ankles this morning.

Tuesday, September 15, 2009

Luke's Imagination

Luke is the best self-entertainer ever. (My mom says he gets that from me.) With Asher in school most of the day, Luke and I like to putter around the house. And, Luke prefers that I not be around while he putters.

Here are some play areas I found after putting him down for a nap:

Ok, this one makes me cringe a bit...these cars were first used in the planter and then, made their way into Aunt Gail's baby grand piano (that we are borrowing).

Seriously, the kid will play in a planter for 1 hour, talking to himself and the trucks he is playing with, or with animals, growling away among the houseplants.

Mom, I am a BUSY BOY!

Last year, Asher's academic team recommended that he do his PANDA program in the afternoon and a mainstream preschool in the morning to get him ready for kindergarden.

All summer long, I agonized about this. Asher going to school from 9 to 2 pm every day seemed like a lot for a little boy who still takes naps. But, as a side note, how lucky am I that THIS is what has been keeping me up at nights?

So far, Asher has been delighted. He loves the morning school, where he gets to see his best friend, Mary, and he gets to carpool with his friend, Zachary. Then, there's still those bus rides in the afternoon plus getting to eat lunch at his "old school." The first day of this full schedule, he got off the bus and came in the house with a big smile and said, "Mom, I am a BUSY BOY! I get to go to 2 SCHOOLS!"

And, then, yesterday, I picked him up from school #1 to go to school #2. I said, "It's time to go to your other school."

Asher's response: "Yeah, I go to 2 schools. Hmmm...maybe I could go to 3?"

You'd think that since he had two different first days of school that I would have got a picture of ONE of them, but I didn't. There wasn't a need for any back-to-school shopping, so both days kind of snuck up on his. So, here's his school picture from his "old school," which shows how really slow I am at blogging. I was hoping for a a picture of him home from school--dirty and sweaty as a 4 year old busy boy should be, but he's usually asleep when the bus driver drops him off.

Thursday, September 3, 2009

Fashion advice from Grandpa

Asher and his Grandpa Starr are buddies. So, it's no wonder that Asher has been taking fashion cues from Starr ever since they had the same sandals a couple years ago. When Asher noticed that Grandpa often wore socks with his, Asher knew it was a trend to be followed because Grandpa is so cool.

A few weeks ago, Asher had been enjoying an old pair of my sunglasses, so I got him some sunglasses in his size. He has taken to wearing both pairs on his face because that's how Grandpa does it. (Starr wears glasses and often uses a pair of sunglasses that flip over regular glasses.)
Note: Starr looks much more dignified and stylish than Asher when he wears his two glasses.