Jacob got his new NEW glasses yesterday. He take them off still, but he seems more comfortable.
Sometimes I just don't know what to think. At moments he is stubborn and does nothing, he is spastic, arching and crying. Then he has moments of calm. During these moments I see glimpses of what his potential is.
Examples: Today he sat up with legs wide on the floor and his hands down supporting his body with the physical therapist behind him. He was supporting himself and she was only there to catch him when he decides to go all spastic and fly back or forward. During these few minutes he looked around the room, held his head midlined, and even looked back at the therapist and smiled.
I took him to the park and 1 he kept grabbing the straps that supported him in the "special needs" seat. Jacob never grabs and he also decided he would eat it (eww!) 2. He kept taking his glasses off. Not just racking them off his face, but grabbing them with his hands and holding them. I caught him fondling them more than once while we were at the park.
Tonight in bed (which by the way he was in bed at 7:30 yea for me!!!) during one of his wake ups. He was totally relaxed. he was not doing any of his crazy arching, face scratching, balled fist stuff. He also was not maintaining his usual arched back hands at the face posture. He is actually rolling himself to his side and back to his back on his own. He is putting his hands together and leaving them open more often.
Now onto the frustrating part: He will show us that it is possible for him to do these things. He will do it for a few minutes, a day, and hour etc...then he wont do it again for a month UGH! Like he won't eat solid food for me anymore again, he continues to eat approx 4 ounces at a time and does not chock or gag a whole lot, but also makes some horrible noises when he eats the speech therapist would not approve of. He also refuses to suck a pacifier anymore (hence the reason I can't get him to eat solids) If you put it in his mouth he will looked at you all cross eyed like and make noises in Jacob language saying "Take that damn thing out of my mouth I don't want it!"
His tone today has been really good and Tuesday he was so tight. Oh another thing he only does when he feels like it is taking steps in his walker. As the therapist puts it "he is very random" I had him in the walker Tuesday night and he was cursing at me in Jacob language. Throwing his head back like he could not hold it up, and making this horrible strider noise like he could not breath. I personally think he know I will take him out when he does this so he continues to do it. Then all of a sudden when I was not paying attention to him I hear this BANG! I look over to find Jacob laughing like he was being tickled because he had just walk all the way across the dinging room/ playroom toward me and 2 of his wheels of his walker had fallen down the step into the living room. He thought it was the funniest thing in the world. Then he went back to his screaming like he could not breath until I picked him up.
Dang why does he have to be all de-ta-de like 98% of the time then, be like ha ha I can do it, I just don't feel like it.
Okay I am ending my rant and yes blah blah blah I know he can't help it and it has to do with him neurologically and so days may be easier than others but I really freaking need a magic wand to make stop all of this flip flopping. I'm not asking for him to be "normal" just getting better. Oh and I am on a new mission to win the lottery LOL so I can get Jakepoo, Ava, and Andrew everything they could ever need. This meaning mainly when Jacob is 3 all the programs for disabled kids mostly go bye bye and it turns into sorry for your luck deal with your kids with no financial support and BTW all the cool stuff your insurance won't cover. :-(
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