Tuesday, July 12, 2011

too tired

Ok, so we've been playing the  triangle game for a few days now. Basically we take 3 foods and put them in the shape of a triangle. Then we just touch the foods and applaud, clap, earn points, cheer, whatever after each touch for a total of 15 touches. When Adam does 12/15, we move on- but not till the next day. The steps are: touch, give it to me, hold it, touch your cheek, touch your lips, touch your tongue,  put it in your mouth and spit it out, put it in your mouth and hold it for a second then spit it out, then swallow.

We are only on step like 5 or something, but we are getting there. 

I'm also ridiculously tired and feeling a bit drained from all this. Maybe it's being around so many normal kids and the complaining stay at home mommies I am surrounded with by having summers off. I'm not sure. I wrote about this in my last entry and still haven't really shaken the worn out blues feeling I described. 

It's tiring always smiling with strangers. Saturday, I was at the town pool and Adam was playing with another little girl. They had the kiddie pool to themselves. I was sitting in the pool with them both and the girl's mom was away from the pool in the shade, I was watching them and the mother came over to me at one point thanking me for watching her daughter, but she couldn't sit near the pool because of the new baby. She was holding like a 3 or 4 month old baby.

She said, "It's so hard when they are at this age, I mean I just hate it, I can't take her anywhere in the summer, since they can't wear sunscreen at this age. It's ridiculously hard, you know. Well, thanks for watching Kaitlen"  

Me, 5 years ago, was like, yeah cool, whatever, I know what you mean. Me on Saturday faked it and said, "Yeah, no problem, I don't mind watching her" and I ignored the complaint.

Inside I was seething. Over dinner I vented to Phil, yelling and asking him if he knew when it would get easier. Like when will I not be angry. When will I not have to stop myself from turning on this mom and shouting at her, "Really, really? It's so f'in hard because you can't put freaking sunscreen on her? Try  3 summers with a hole in her neck, where you have to learn to take care of her, try never hearing her voice for over two years, no laughter, no crying. Try never leaving the house because of the tubes and monitor and nurses. Try feeding your child through a tube. When my son was her age, I had to insert a tube down his nose and check for placement with my stethoscope before I force fed him. Haven't you ever seen children in the hospital? Do you know how freaking lucky you are? You hate the summer because of  SUNSCREEN? " 

 And then to top it off, the insurance company denied a claim again. I can't even tell you how many times over the last four years they have denied claims, how many times I've had to contact doctors, file appeals, argue with them. It's ridiculous and very very draining. There really isn't anyone out there to help you with this. Last year was really bad with the feeding appeals and it really makes me upset. 

Well, in spite of the fact that Adam has been the same for years, I need to file another appeal. I am  honestly, really really worn out. It's not even a crazy denial, like it's not like the ones for his surgeries or extended hospital stays, it's just the denial that is breaking me. This is the one, the one too many, the one that is making cry. Enough already. You won. You won, insurance company.  I am done.  I am just too damn tired. 

Today I took Adam to a Bug Museum this morning. I was surrounded by more normal moms, normal kids.  Adam touched: a millipede, a tarantula, a scorpion and  a hissing cockroach.  I am wondering why he won't touch lasagna, tomatoes or corn on the cob. 

It's funny and ironic and I'm on the edge between laughing and crying... because I'm tired. 

Wednesday, July 6, 2011

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.



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.


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.