Tuesday, May 18, 2010

Happy Flag Day Ayiti!!

Today is/was flag day in Haiti. It was a perfect day- we made a flag pinata and haiti brownies in school and set up a party at the rescue center. We had diri blan ak sos pwa (white rice and bean sauce- my fav. Haitian meal) for lunch, and I dressed up Darlens and took him on our walk (I often leave him here) and did a mini Haiti photo shoot on a bench in the middle of Haiti's beautiful mountains in honor of flag day... I'm too lazy to put a post together with details and pics from today- that is to come. For now, enjoy these pics of Darlens deciding to mess up the photo shoot by eating the one thing I'd rather him NOT eat :)

God made dirt...

and dirt don't hurt...

but it sure doesn't taste good! (or have any calories... dang it!)

On a side note- Darlens has had 3 good eating days in a row- praise God! Thanks for all you who are praying for him. God is good... always :)

Friday, May 14, 2010

a little more about Darlens...

I have gotten a bit of feedback/advice on my rant from yesterday- thanks :) I want you to know that I do understand that the gagging is completely a conrtol issue (for Darlens) and not an actual gag reflex. I understand that, even if subconsciously, he wants what he wants and he will do what works to get that. I understand that my reaction to these power struggles are majorly affecting his behavior. I would label him failure to thrive. Berlancia was "failure to thrive" but once she got attached to me (which took months) she would do anything to please me. Ex: If I wanted her to eat and gave her good feedback, she would smile, stuff her face and be happy, and then gain weight. I was able to get to the point where I understood Berlancia's body (she had AIDS) so well that I was able to control her fevers by knowing her behavior days before and keeping sure she was keeping hydrated/eating yogurt. It prevented her from getting sick. It worked for her while I was there... I don't know the science of why, but it did. It took a long time to get to that point, but I was fortunate enough to get to know her like that and for whatever reason it worked for us. Nickenson had gag reflexes which were more of a tolerance issue than a control issue. Once I figured that out I was able to feed him a little at a time more frequently and he started to do better. I know neither of these kids are comparable to Darlens, but identifying the natural gag reflex vs control gag is what I have learned from them. (yes- both of those kids died. no- neither child's COD had to do with the fact that they wouldn't eat. I got past that point with both of them before they died).

I understand that the fact that Darlens has been neglected and starved for three years makes him unusual and that "normal" care/punishment/treatment will not work on him. My dilemma is I don't think there is one "right" solution for kids like him. Every kid is different and I believe each child is different in the way they respond to things. Despite my many attempts/efforts, I have not found the one that works for him. What I know for sure is that if I don't get him stronger/fatter/more mobile he will continue to fall back and, if he lives, will be even more mentally and physically handicapped than he already is. I don't want that to happen. But at the same time I want him to live (obviously).
So, how do you get a child to eat when they don't want to? I tried tubing him but it didn't seem to make much of a difference. One day it would work great and the next he would see the food going down the tube and throw up. Ok... so I tried when he was asleep. He's a sensitive sleeper. Fail. He has control over his own body. I need to find a way to manipulate him into wanting to eat when I need him to. If he doesn't want to eat and I put food in his mouth he holds it there for HOURS. And then drools it out when he falls asleep. If he chooses to eat, he'll chew it and then decide when he's done. The amount of food he can stomach is not an issue: today he ate 2 eggs, 3 crackers, and milk with yogurt all in the same hour. That was this morning and it is still in him. Yesterday he ate a bite of eggs and when I gave him another bite he threw it all up and then proceeded to refuse to not eat/drink a single thing all day except for if I gave him straight pedialyte. My enthusiasm with him eating (positive reinforcement) does not seem to bring anything new into the control game we play. If I yell at him or smack him on the cheek while he gags he stops and doesn't throw up; but that is (debatably) a hindrance to his psych issues with food.
So a summary on him: I know it's not an actual food tolerance issue since some days he is able to eat anything and everything with no gag reflex. After a good day he decides he doesn't want anything but his orange flavored pedialyte. He refuses to drink anything else. He refuses to eat anything else.I have tried mixing things with pedialyte and tried not doing it in front of him and he notices, and gags. He wants what he wants and his whole life has conditioned him to win at the food power struggle. If it's one of his "refusal to eat" days, I can refuse to give him pedialyte in hopes that he will eat/drink other stuff so that he gets the calories he needs, but he just opts out of eating/drinking at all. After all, he is 3 years old and came here weighing 11.4 pounds. It's not like the kid isn't used to not eating for days and days. SO. My options are- 1. let him not eat and wonder if after a couple days he will eat whatever I give him and 2. give him the pedialyte and get those calories down him and keep him hydrated and hope something changes with time.
Neither of these have worked yet. I need an option 3. Anyone???

Thursday, May 13, 2010

Excuse me while I rant for a moment...

Darlens is killing me. I don't understand him and why one day he can eat a sandwich and eggs and a yogurt and crackers and rice and jello, and the next day he cant keep down one single thing. Most kids I've taken care of like this are very special in their needs but there is some sort of pattern, some consistency which once discovered makes caring for them a bit more easy and predictable. He only ever wants pedialyte(sp?) and if he sees me pouring anything but that into his bottle, he gags and proceeds to throw up the entire contents of his stomach. Ummmm, I'm not very smart but that just isn't normal or right. He is 3 years old and acts that age when it comes to getting spoiled and wanting what he wants, but he can't do anything but sit there. He hates to use his legs. I make him use his legs for at least 45 min a day now (standing/jumper/working on movement) but he is starting to throw tantrums (yes tantrums- no tears involved)and I am hoping it stops- it's not the best background noise for school. I am able to leave him alone because of his immobility... otherwise I'm pretty sure I would have gone insane by now. He only will make one noise: hmmm... hmmmm... hmmm... hmmm... hmmm... hmmmm... hmmm. Humming. ALL DAY&NIGHT LONG. And I'm not talking a soothing humm. I'm talking you tell an ornery kid not to hum in the car and they do an in.your.face HUUUUMMMMM. Seriously, the kid will be passed out in his bed at 11pm and then all the sudden from his crib comes a hmm.. hmmm...hmmm... hmmm... and there he is, humming. This happens about 20 times throughout the night. I have learned to sleep through most of it but honestly, for such a little dude he's got an impressive set of humming chords. Because that's apparently all they do... and his poop. Let's not even go there. This kid is crazy, and apparently it's contagious. Well, at least he's happy; most of the time...

He's dang lucky he's cute.

yes i love him
yes i understand he is this way because of what he's been through
yes i know i chose to care for him
yes i want to wring his neck sometimes. Oh wait, thats not a disclaimer... honesty time! ;)

Wednesday, May 12, 2010

What we learned in art today...

art is (very) fun!
kids who eat paint are losers...
kids who can't hold their pencils get them taped to their hands...
purse your lips to hold a mustache...
well, maybe Trey didn't master that today. There's always tomorrow...
I love my job :)


A while back we put out a request for new aprons for the Rescue Center staff on the blog. SO many people responded and we are thankful for all of you who helped in sewing these for them! They take pride in the aprons and I've noticed most of them have their favorites and wear the same one often :) These aprons are worn daily and are much appreciated- thanks to everyone who helped, either by having a sewing day at your church or tackling a few at home!

The one sewing day I went to was at Fair Oaks Press at Christmas time... everyone was so happy to sew for these ladies... thanks to Fair Oaks Pres and all the other churches taking up projects like these. You rock :)

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