Tuesday, August 31, 2010

Feeding update

Thanks to everyone for the suggestions on corn-free foods.

I spent a while at Whole Foods last weekend with some (expensive) results. I didn't find anything in the cereal aisle, but I did find potato crusted fish sticks, corn free breaded chicken nuggets, a number of different kinds of crackers & chips, some sweet potato fries and a few other odds and ends.

So far, he doesn't like the fish sticks (frankly, neither do I. Blech.) but is sort of okay with the chicken nuggets. He liked the sweet potato fries up until a point. They have pepper on them, which isn't too hot.. until about 5 minutes later. He freaked out. There was clutching at his tongue, drooling and frantic whining. Way to go, mom.That's just how to get your kid to like food. Unfortunately they only had 2 options, and the other was jalapeno. So much for that. I'll try to make my own next time.

At Maureen's suggestion, I checked out the chocolate chex. That is probably our biggest win. He loves them. He ate 1/2 cup of them yesterday. That's about 85 calories, and they are fortified with a number of vitamins & minerals. He liked one of the kinds of pita chips and I was impressed he was able to eat a whole one one day. They're large and very difficult to crunch through.

He has definitely improved his eating again, though. He even let me feed him some purees on Saturday. It had been nearly 3 weeks. I was so nervous that my hands were shaking, but he did great. He ate about 6.5 ounces with little protest.

I've also been working with him on self feeding with a spoon. It's very challenging since he doesn't really WANT to eat stuff, and then if I can talk him into it, he's not great at it. My method of choice has been to just put a very small container of yogurt and a spoon on his little table and let him make a mess. He likes to stir and sometimes will sort of lick the spoon. Mostly he drags it all over the house making a mess. The cats are happy, I'll say that much. That's a morning activity, only, though. David doesn't seem to have the patience for the mess.

Mostly it's just been nice to see him enjoying food again. Still no real luck with drinking. I found some corn syrup free chocolate syrup (nestle nesquick for anyone interested) to flavor some milk with, but he won't even try it. Drinking is so intermittent that it's hard to catch the right mood. He won't drink a drop for weeks at a time, then will pick up a cup and drink an ounce or two of water out of nowhere. I can't leave milk out all the time, so I can't have it available 100% of the time. And if he's expecting water and gets milk, he is unhappy! But one of the days, we'll get him to try it and he'll be happy.

He had an evaluation by his new OT today. She seemed nice enough. I made it clear what my concerns are (feeding & drinking, and decreased water phobia) and what they aren't. She seemed okay with that. I didn't get a formal report, but we'll go through the whole thing at his next IFSP next week. She did comment several times that his fine motor skills were quite good, as were his oral-motor skills (she seemed surprised. I don't know why people never believe me when I tell them that.) so we'll see what she says as far as therapy recommendations.

My hope is that at the IFSP we can go to just three therapies per week (down for 4 every week, 5 some) and to combine either OT or speech with feeding therapy on the same day so that we're not tied to the house almost every day. I'm really hoping that she'll agree to OT twice/month, not even every week. We'll see what they say and what kind of scheduling we can work out.

I'm just not really convinced that any of the therapies are working great except maybe speech and I'm finding myself more and more resentful of the time factor. I'd like to be able to have play-dates and park visits, but instead we're stuck at home for therapy appointments all the time.

He'll be starting a new daycare on Sept 27 and be with other children closer to his age (there is only 1 his age at daycare now) and I think that will help a lot with his development as well.

Really, I have great hopes for the next 6 months. I just need to be patient and let them come. It's easy to say, but a lot harder to live. I'm trying very hard to focus on the big picture, but sometimes it's hard to see much beyond having a spoon thrown at you or the fact that he still doesn't call me momma. I'm a worrier by nature, but Robbie has certainly proven to me that he is far more capable than I always give him credit for. I need to trust him...and God.



Two Hands said...

Sending you a big virtual hug. I can't imagine how difficult things can be, but God is faithful and you are a tremendous Mom. Robbie is in great hands.

Tasha said...

I think that him being around kids his age (or bigger than him) will be a HUGE help! Both my girls go to "preschool" on Tuesdays and Thursdays and it has made a huge impact on Bree. Better walking, more verbalizing, and she's even been a tiiinnnyyy bit more open to eating.

How do you work his diet with calories? Do you supplement at night with a drip?

ggop said...

Trish - I totally get what you are saying about therapy. I find myself very frustrated at the lack of progress in therapy myself. I'm very glad Robbie's oral motor skills are good.
Wishing him the best in coming months. Do keep us posted on the new daycare.

S said...

I'm happy you found a couple of things he likes. That is a step forward.

Just look at how far he has come in the last few months. What a wonderful job you both have done. Robbie is being such a brave boy and you, my dear, are being such a patient Mommy. Hugs.

Maureen said...

I've had a few more random corn free crunch food thoughts. Some I've forgot but some I still remember.

Animal crackers. I have generic Target brand ones right now and there is no corn listed.

Ice cream cones. The Joy mini ice cream cones I have also don't have any corn (my kids LOVE these, I will fill them with Chex instead of ice cream, they will eat the cereal, then the cone). The cones themselves are somewhat bland, I'm not sure if sugar cones have corn in them.

Butter Waffle Cookies from Trader Joe's are also corn free. They are a Belgian biscuit, I don't know if other "biscuit" type things are corn free. I know I've got other "Belgian biscuits" from regular food stores around here. My kids love them. They are hard (I used to get thicker ones instead of teething crackers, now I try for thinner ones so they are easier to eat).

Triscuits. My kids don't like them, but they are corn free and crunchy.

Naked Nuggets. These I can only get from Costco (grr, I don't have a membership so I have to smooch off of friends that do). There is only chicken, potato starch, and some seasonings (personally I think they are too bland and have to add dip). So if it isn't the breading part Robbie likes, this might work.

I usually start self feeding with forks not spoons. Not adult forks, but my favorite are the First Years Toddler forks (I think I got mine from Wal-Mart or Target... I know I've seen them at BRU). I "load" the fork with bite size piece chicken nugget (or something similar, my kids loved avacados and bananas other fruits). This way the food doesn't fall off on the way to the mouth, it is still pretty easy to get it off once it gets to the mouth and the kid gets a good size reward (not just the taste of what fell off), and the forks are really so dull that for the most part I don't worry about the kid hurt themselves with it.

Don't take this the wrong way, but I'm somewhat jealous of Robbie's access to therapy. I have given up trying to get my 2 year old therapy through early intervention and am doing it privately through our insurance. Which is expensive. I also wonder how much therapy is doing for him, and how much is it just my son developing on his own (with my encouragement, which I would do either way). I completely hear you about being tied in by therapy. I have to take my kids to theirs, but it eats up 2 days a week (and then there is 3 days of preschool now for the older one). On the positive side of taking mine to therapy, I know exactly what time it is going to be.

Amy said...

Glad you had some luck! We've been using the Alexia sweet potato fries and my boys LOVE them! :)(Hmm I just tried to look up the ingredients and found only their spicy SP fries. Weird!) The Ore Ida ones are corn-free, too.

Trish said...

Amy- I haven't found the Oreda sweet potato fries at any of our grocery stores. One store has some off-brand sw. potato fries, but they're sprinkled with corn.
I really just should make my own. We have a mandolin slicer thing, it wouldn't be hard. I'm a lazy ass!

Tasha- yes, he gets 20oz of whole milk with a packet of carnation instant breakfast at night.

Thanks for the tips, Maureen. I'll check some of those things out!
And you're right that I need to count my blessings that we have therapy so readily available. We do have a co-pay to the state, though it's much cheaper than paying privately.

I wish things could be easier for you guys as well!

Amy said...

Ah, I should get a mandolin slicer. I've made them myself a few times but it was time-consuming (I am way lazy) and they didn't really eat them nearly as well as the frozen kind. Not sure why. I hope you find more stuff he'll eat!
Also, have you tried asking the store manager to stock certain things (like the Ore-Ida SP fries)? I've heard that can work. :)

Tracy said...

Christopher makes some mean hand cut sweet potato fries! I should send him out to you. We all need someone to cut fries for us. ;) I agree, it seems like a lot of work.

I'm glad Robbie has some new foods to try and you're having some successes.

Good luck with the therapy schedule. I hope you get some more freedom.