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Friday, July 15, 2011

My big boy!!

A lot went on this week. Tuesday Jax had his VNS turned on. They turn it on the lowest setting, to see if he reacts negatively to it. I guess it can be irritating, and make kids cough.
Cough!
We already have coughing problems, we don't need anymore! But he did fine, and she turned it up a bit more. We'll go in in two to four weeks to turn it up one more time. Its hard to say right now if its working or not. Because most of his seizures are sub-clinical, the only way to tell is to get an EEG. Although the other night, as I was putting him to bed he had a seizure, so I grabbed his magnet and swiped it across the VNS. In only a second or two, the seizure stopped. So I think its indeed working!
We also got our longer trachs in the mail the other day. Man they are abnormally long! So now my 5 year old has an infant trach, with an adult length! Sheesh, he really doesn't do anything normal!

Yesterday Jax had his last therapy with his OT. We would have had to say goodbye to her anyway when we moved, but she is quitting to stay home with her girls. It wasn't any easier because she's had him since he was a baby! Almost 6 years working with her.
But as she was sitting there with him, he looked so big to me! He is starting to look like a little boy instead of a baby! Its hard because he is so little, and because he can't sit up, so it makes him look young. I had to grab the camera, (even though I don't have daddy's nice camera, he stole it back) Because if you look at these pics, he looks like any other little boy! You'd never know that he can't sit up on his own, or even hold his head up!
With his therapists help, he can hold it up for mere seconds, but its long enough to take pictures!

So I can look at these pictures and see the little boy he would have been, no brain injury. But Lord knows I wouldn't trade him in for the world!




10 comments:

  1. He is getting that big boy look! It's amazing how overnight they can suddenly look older.

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  2. love the pic of arina attacking him and his face...priceless! :)

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  3. He does look SO BIG!!! And, very handsome too!! :)

    Wouldn't it be wonderful if our boys could sit up one day?! I'm still holding out some hope! Hugs!!!

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  4. He does look big in those pictures!

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  5. What a treasure, a gift from God. He is looking like a little man. Hugs

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  6. He does look like such a big boy lately. Handsome little man!!

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  7. He is such a little muffin! He is precious! Those cheeks look so kissable!

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  8. we really does look like a big boy! and I just love Arina, she always right on top of him!

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  9. wow - those are some great pictures of Jax

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