Likes and Dislikes

Sometimes I forget what I have shared about Owen's abilities, or lack thereof, so here is a brief synopsis.  Owen has very low muscle tone (i.e. he is floppy), but has excessive tensor tone (I think that is what it is called).  Basically, when he tries to engage his muscles voluntarily, the excessive tone kicks in (involuntarily) and makes him become incredibly stiff.  This is still being debated in terms of how much discomfort he feels, but it has been likened to a muscle cramp. I've had one of those- they hurt. Owen has no neck control and has very limited or no vision.  We don't know for sure what he can see, but his eyes do not track and he gives us zero indication that he can see anything.  Owen has very little social response.  We believe that we can tickle him and occasionally make him laugh.  We do feel confident he can hear.  He will turn his head to your voice if he is in the right mood. Here are Owen's likes and dislikes.

I will start with the list of dislikes since I am very familiar with them.  Owen may struggle to accomplish many skills, but crying is one he has mastered. He does not tolerate swings, bouncers, or anything like that due to the excessive tone and lack of vision.  When forced into a semi-reclined or seated position, the tone kicks in and he becomes stiff as a board and screams.  The motion of these items are also disorientating to him because he doesn't know how to process the sensation of movement since he cannot see. Fun little jiggly toys do nothing to entertain him.  Tummy time does not work due to lack of head control.  Right now, someone reading this blog is thinking: we should do more tummy time if he doesn't have head control, but unfortunately, this is a neuro problem and related to his leukodystrophy.  It has been shared with us that if Owen doesn't show signs of developing head control by six months of age then it is a good bet that he never will.  He's got one month left. Owen's biggest dislike is being put down.  This little boy is a snuggler and demands frequent cuddle time.  I love to hold my little boy, but now that we are on month five of this...I would be okay with him letting me put him down.  His second biggest dislike is sleeping.  We truly have a newborn.  Three hours is a big success for us if we can get him to sleep that long at night.  Otherwise, a one to two hour stretch at a time is the norm.  This is exhausting and is easily Pete and my biggest dislike about Owen.  Sorry buddy, but it is true.

Things Owen does like include being held in our living room.  Being held in our kitchen.  Being held in our playroom.  Being held on our deck when the weather is warm.  Sitting in his bathtub for ten minutes or less.  Being held in any of the rooms on the second floor.  Being held on the third floor.  Occasionally, laying prone on a changing pad that sits on my kitchen island (haute decor- every kitchen should have one).  Occasionally, laying prone on our footstool in our living room.  Occasionally is code for ten minutes or less.

In summary, Owen is exhausting. He is also very lovable.