Yearly update

Hello all,

we haven't updated this for a full year! Sorry about that. :(

Ben is doing great. He's now a first grader, although he spends most of his day in Kindergarten. He's learning some concepts well, but seriously struggles with others. No surprise there, but it's still hard to swallow some days.

He can walk and climb stairs, but his balance is very poor, and his response time is too long, which means that when he lets go from whatever he's holding on to, he starts falling, then he realizes he's falling, then he hits the floor, and then his brain tells his legs to compensate. In short, he can walk slowly, but he'll fall if he's not holding on to something.

Ben has been fitted with hearing aids. The radiation touched tangentially his inner ear, so he lost a little bit of hearing. He can still hear pretty well without the aids, but the sounds come across muffled. He can't hear the 's', 'p' and 'th' sounds at all, so the hearing aids help him in that range.

The first evening after wearing them the whole day, I started his music (Mormon Tabernacle Choir every night) and put him in bed. When I then took the aids off, he started signalling he wanted them on again to hear the MTC better. Of course, I had to give in...

His speech is slurred and slow, but getting better. He can now form words, and most of them are intelligible, at least for us. His talk is very slow, but if you have the patience, he can communicate with you and let you know what he wants. His brain processing is also slow, so when you ask him a question, you need to wait for him patiently to process and respond.

He hasn't had any food or drink through his stomach button for some 2 or 3 months (or more?) now, so we have a surgeon's appointment next Friday. He'll probably become Buttonless Ben in a couple of weeks! That'll be very good, especially for when I carry him on my shoulder coming downstairs (a favorite game of ours). I won't pull his button off! (He has pulled is button off his "panza" several times. At first we were all paranoid about it. By now, we just wash it, moisture it and push it back in. No biggy for him or us...)

He's a very good older brother to Jared, and Jared helps him when he can. They're developing a beautiful relationship, except when they fight over some toy. It's funny to see them roll on the floor in a fight: Ben's attack is to grab-n-hug Jared as hard as he can, thus depriving Jared of his mobility. Jared's defense is, then,  to get out of reach and hit from a distance. When Jared is out of reach, he wins. When Ben gets him, it's a bear hug.  :D

Ben has a very sweet and determined soul. He copes with his limitations as well as he can, with a smile most of the time. He's learning to understand the world around him and mostly accepts it, with peace but not with resignation.

Of course, he'd like to do things like other kids, but most of the time he just does what he can and is happy achieving those little-for-others-but-big-for-him goals. For example, when other kids run, he gets a sense of pride and achievement in being able to climb the playground by himself.

I believe he will continue to improve not because his brain kindly allows him to, but because he wants to and his will is strong enough to beat his brain into submission. :)

We are blessed to have him with us and have the opportunity to care for him.

We'll try to keep this blog going, but as life stabilizes we'll probably incur in other year-long silences...

Thank you all for your support. Keep the prayers coming.

Love you all,
Gerardo