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! ;)


  1. Don't you wish you had the luxury of taking him to a children's hospital and figuring out what is wrong with him??? Wouldn't that just be too easy??? :-) Praying for your patience...

  2. Just some ideas...:
    Keep the pedialyte can. Reuse it. If, say you are wanting to give him milk, go into the other room to get the "can", pour milk into it (you might start by adding a little bit of sweetener at first, then weening it down to just milk after a while), carry the can out, and let him see you pour it into the bottle.
    Also, pedialyte will taste less yummy if you start to water it down. Use milk or water, depending on the kcals you need to meet. (I would still reuse that can).
    A fan can make white noise and cool the room down to drown out the incessant humming!

  3. Kenbe Fem girl!!! That is very odd -- to barf sometimes and not others ... no idea!

  4. AHHHH, Anna! It must be so frustrating for you. I cam sitting her trying to think of reasons for the throwing up and it isn't consistent with sensory issues which is what I was first thinking. He really seems like a stubborn, head strong kid who really like pedialyte and is exercising his control over you by throwing up! That being said, stubborn can also mean resilient...I am praying he chooses to harness this energy into eating real food and keeping it down. As for the humming...should we send you some ear plugs? is the humming comforting to him in any way? It's so hard to know how to handle these kids! What are they thinking? I know we finally figured out (different situation, I know) that G was manipulating us and all the talk of the trauma she may have experienced seem to be a waste of time. She knew how to get what she wanted and she was going to do it, NO MATTER WHAT!!!!! Gotta love her. Thanks for loving the difficult ones, Anna. Oh yeah, G says hey!

  5. it's good you're venting! venting is healthy! and i agree with annette, maybe it's his way of controlling things. if he can't walk, he has hardly any control over anything else!

  6. First, ask God to help you forgive yourself for your frustration and Darlens for his behavior. Remember, every reaction you give to him reinforces his behavior. Then ask God to help you not take his behavior personally. Surrender him to God, do what you can and leave the rest to God. I agree that he is cute and I think he's has some smarts or he wouldn't be so good at frustrating you. Start each morning thanking God for what Darlens is teaching you and asking Him to help you do all you can to help this boy, then leave the rest to God. From one of your admirers

  7. related to the vomiting, check out "Rumination syndrome" Where Reflux is a medical issue, Rumination (often misdiagnosed as reflux) is behavioral. Wiki has a pretty accurate description. For the walking, I wonder if he has a tethered cord? Does he have a simple on his back, near his tailbone? What about a slightly hairy patch on his lower back? A lot of kids who have a tethered spinal cord can walk, or attempt to walk, but you can tell their movements just don't seem very well coordinated. Those who don't walk, but can attempt to use their legs fatigue very easily because it's work to get your body to do something that the nerves won't cooperate with. Spina Bifida Occulta (which is different than spina bifida) is related to this. Anyway, just some things to think about. Even if it's not either of these things, they could help you figure out what it COULD be. I agree with one of the other commentors: I wish you had a children's hospital right there!


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