Monday, September 24, 2012

Sitting by Christmas???

Evan has been progressing very nicely these past few months. But the one area, specifically, he has struggled with is gross motor. As a preemie, born at 30 weeks 5 days, he was expected to be behind. The saying goes that 'most preemies catch up by the age of two'. Well, not only have we passed two, we are still struggling to catch up with his motor skills. While in the NICU, we were told by a very wonderful and educated nurse that Evan would likely catch up by the age of three. I am HOPING that we can at least, get him sitting on his own by Christmas. And what a Christmas that would be.

With Evan being my first and only child, this is all I know about taking care of a baby. This is my normal. Our normal. I try not to compare his development with other children, especially healthy full term babies. In the beginning I assumed the preemie aspect was why he struggled with development but it is obvious that his condition has been playing a roll as well. His calorie needs have been taking over and have stunted growth and motor abilities. I do find comfort knowing that there are other children, with Evan's condition, who had some physical motor delays as well. But I am very optimistic that he is picking up the pace and is on his way to the motor world.

Snacking like a big boy

There is no doubt that this kid is a genius. His little brain is soaking things up left and right. He is learning so quickly and knows so many things that I probably don't even realize. He seems to  understand what I am saying 95% of the time but just can't communicate back to me completely. You can tell that he wants to move around badly. He wiggles and squirms on his back and could probably get around the room that way if I let him. He desperately reaches and points towards things he wants. I figure since he can't walk to where he wants to go I'll walk for him and he can lead the way. And it usually will be right out the front door since he loves to be outside.

Trying to escape

Evan is bearing weight on his feet for longer periods of time. Usually once he starts to stand, I do not need to support him at all but do, since he will randomly break his knees and refuse to stand any longer. This is still a HUGE progression compared to this spring. He has a prone stander which helps him stand and helps strengthen his legs. He also has a custom made 'tilt & space chair' and we no longer have to use the chair's harness for sitting. In the beginning of this year, Evan was still pulling forward when he sat. The harness kept his shoulders back and allowed him to save some energy while sitting, eating or playing in the chair. Now, I never use the harness and he sits quite nicely. He continues to use laterals to support his lower torso but is in control of his upper body. Sometimes Evan will sit on his own without support. But once he starts to tip or lean, he neglects to put his hands down in reflex to falling. Something we continue to work on.

Oh Yeah- I can stand
(when I feel like it)

The TV show Bubble Guppies are the new best thing for Evan. Other children shows don't do it for him but this one tops the cake. He giggles at the characters with a huge smile on his face and I find him 'dancing' and clapping along with the songs. Luckily, DVR has come in handy so we can watch it at the appropriate time. It's hard to say no to something he obviously likes but I try not to abuse the TV. I will let him watch an episode or two while I clean up his bath stuff and get breakfast ready. Fortunately, it is educational and entertaining at the same time (and the songs are incredibly catchy).

That's a Bubble Guppie smile


The progression Evan has shown over the past few months has been tremendous. It seems to be the biggest jump in development he has made in his entire life. Seeing these patterns of making leaps and bounds, only excites me for the future. I cannot wait to hear his little voice have a conversation with me and watch him run around with Bruli. I am very optimistic that we are not too far away from these huge milestones.

Love this boy

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1 comment:

  1. I just want to let you know that your approach to chronic illness in children is inspiring. Your blog helps set a model for other people to follow. I look forward to your next posts! Keep it up!

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