summer means.. feeding camp.

It's summer. Reflections.... One year ago we entered the feeding program at CHOP. Adam was 100 percent fed through a tube. This was due to two plus years of having a trach and multiple surgeries to correct his airway.

We lived in Philly for 5 weeks, after intensive therapies, tears, fighting, tantrums (mostly mine). We left the program 50 % tube fed and 50% fed by mouth- we feed him.

This was huge, life changing, and incredible. It also felt impossible to sustain. We did it, but it seemed impossible- the schedule we had was freaking nuts (see Sept/ summer entries). I honestly don't know how we did it, it was crazy. We kept following up with CHOP every few weeks, changing things, increasing things, following them exactly, very strict protocols.

At the one year mark, Adam is now only getting one tube feed at night- one feed only. Just one. Just 300 mls, (30 mls is an ounce so that's like 10 ounces). The rest of his nutrition he gets by mouth- we feed him, but it's in his mouth. Following strict rules at meals. This spring, CHOP suggested that we start to find a closer to home program that can continue us along. They weren't being mean, they were just looking at long term- they will still see us.

So, we did. Today was our first appointment. The local feeding center is about an hour's drive, which is way closer than Philly and although we have all come very far in the last year, we still got some things to learn. Current goals:
1.  eat vegetables
2.  feed himself
3.  work on less structure- start to fade away reinforcers and prompts.

We came home with new lists, new instructions, suggestions for reaching these goals, new games to play with food in unstructured ways, and more.

I was feeling a bit overwhelmed. I was all kinds of down this afternoon, all kinds of man, when is this going to get better when is he going to eat why is everything so hard kind of feeling yucky. I had to go back and remind myself how hard it has actually been, and how easy things are now, compared to then. He IS going to get there. I will make sure of it.

 ADAM ONE DAY OLD

ADAM 4 YEARS OLD. MAD.

Just as I was feeling down and needed to remind myself- you people, you guys out there need to remind yourselves, too.

People, you got to be patient. Stop asking me "How's he eating? Is it any better? How is Adam doing with his meals? "

I know you are making conversation, but it's been YEARS. It will be YEARS of work. I am getting there, we are making progress.  Also please stop suggesting things for me to do. Please stop with the "my kids don't eat broccoli and you should let him be hungry and you should let him choose and you should sneak things in his food and make it a game and let him eat cookies and junk"

I would really like to turn around and say to you... well I probably shouldn't say what I want to say.

But...

When you suggest something to me, me- the person who has read countless books, met with experts in the field, worked with therapists twice a week for 3 years, spent five weeks with four therapies a day, is ABA trained, special educator. When you just flip a suggestion to me, you make me feel like shit. Your suggestion, your advice, which you probably got from some freaking 'child expert'  talk show guest, your suggestion that I should do what you did to get your own kid to stop eating CocoPuffs and have a banana, is unwanted. Your advice makes me feel bad. By being pretentious and self-righteous and thinking that you can help me, you hurt my feelings. Do you really think that I haven't tried it? Do you really think that you can help or are you just showing off your own parenting skills? Are you using your 'advice' to really just brag about how great you are as a mother because your child eats squash?  You are making me feel bad. Your "tips" show that you don't know me. You don't know all that I have been through and you don't care to know.  Your idea that I should "try stickers" makes me want to punch you in your face.

I feel better now.

Tomorrow we are playing a game with broccoli, carrots and corn.  I'll let you know how that goes.