Tuesday, October 9

Developmental Testing Again

Well we just spent the last 2 hours with a string of therapists testing Bryce. I couldn't be more frustrated or discouraged.

It's just so hard to hear that his gross motor skills are at the level of a 10 month baby and that we should consider augmented communication devices because he may not ever talk as his main way of communicating.

I don't know what I expected and I am so very grateful to just have him here with us. But damn it, sometimes it all just feels so unfair. I rarely allow myself to admit this because where is that going to get us?

I just keep hoping that someday I'll hear him say he loves me. That someday he'll be independent. That someday I won't have to worry about what will happen to him after we're gone.

But 3 years of a therapy schedule that would exhaust an adult and we've achieved 10 months of skills. Really!?!

I would give anything to fix this for him. I have given everything I have to get him here. I'll continue to fight for him, advocate for him, push him and love him until I physically can't any longer.

But I get to be a little frustrated right now, first. Right?

Sunday, October 7

Cleaning House

Finally going through the last of Bryce's medical stuff. I never would have guessed it would be hard to throw away oxygen tubing, nasal cannulas and NG tubes.

Wow, why do I still have NG tubes?? We should have ceremoniously burned all of this in a huge bonfire a year and a half ago!

As confident as I am that we are passed all of those scary breathing issues - I just can't bring myself to not keep a set of emergency supplies.

We'll probably always have an oxygen tank and tubing. And that is ok.