What's been brewing

I wish I could say this post was about beer, although we have been drinking quite a bit of it lately. But instead this post is to share a bit of the circus that has been in my head. It's time to vent.

PCA Hours. Every six months we have to reapply for River's Personal Care hours. I applied for an increase (from 30 to 40) and was denied. We did get the 30 hours, but not the increase. At first I was just grateful to not lose any hours given the current economic situation, however, I've since decided that we need those hours and so I am appealing the state's decision. River is still completely immobile, does not feed himself, cannot easily communicate his needs, and can be rather fussy (can you blame him?). His child care providers are instrumental in not only providing daily living care, but also his supportive therapies so that he can someday sit, crawl, walk, communicate, and we need the help so that we can sustain caring for him over the next months and years. So I've initiated the appeal process and it may be a long time before I get anywhere but I'm not giving up so easily.

Nursing Hours. In most states if you have a child with a feeding tube, you automatically are provided with a home health nurse for so many hours each week. How many hours does River get? Nada. So I'm appealing this one too.

Equipment. At one time I dreaded looking at equipment. It was terribly scary, and it still can be, but I see the importance of it. River doesn't get the proper support from his highchair, stroller, boppy pillow, etc. And he doesn't get to practice his reaching, or postural support when we hold him so he needs other options. Fortunately the state, and my private insurance will help pay for these items as each piece can cost thousands of dollars. Unfortunately this means dealing with the state's bureaucracy. I hope it goes smoother than the above mentioned items. And once I start thinking about equipment, I can't help but think about vehicles. A van seems imminent, but I am not quite there yet.

Finally, I am just so frustrated that there isn't someone to tell me how to do this. Often I feel alone in navigating these systems. I know there are others before me who have traveled similar paths. Why isn't there a guide? Could it be that it is a process that can only be learned by doing, not by telling? Would a book even be helpful? Someone told me that it will get easier as I get more familiar with these processes. I believe her, but it's difficult getting there.

Now for some pictures...


Practicing weightbearing on his legs. He has made a lot of progress here. And he can do it for a few seconds without our support.


He loves his light box and is able to spend quality time in hands and knees as well as sidesitting seen here.