It's been a week filled with middle of the night nebulizer treatments, phone calls to figure out appointments, and the dreaded re-evaluation by early intervention (called first steps in Indiana). It's also been a week where I have spent much time thinking, thinking, thinking....because that's what I do.
Why is her asthma so bad? Is there something going on we can't see? Why is it only at night time? Am I ever going to sleep through the night again? And the inevitable call to the pulmanologist I have waited too long to make only because I don't want to have to increase her medicine, or make another Riley trip since we have three in the next three weeks. But after the emergency room trip earlier this week for it, and the lying awake for an hour after her treatment last night...waiting for another attack, I decided for both of our sakes I should call.
I also tried to be "smart" and make same day appointments a few months ago. Turns out that despite the fact that I checked (TWICE) the dermatologist appointment is not at the same facility as the follow-up with the speech and language pathologist; and of course there isn't enough time to drive from one place to the next...so two trips it is.
And lastly our re-evaluation. It's such a bittersweet things. I'm not certain if all states are like this right now, but ours is really cutting back on services for children with special needs. We know that Abigail's diagnoses qualify her for services automatically. That doesn't mean that first steps will willingly give them to us. By the standards of the state Abigail has never technically qualified. If the standard says children should walk by x age, and the child is walking by dragging one foot behind them, they still are considered as walking. Yeap. Pretty ridiculous, but that's the way they roll. So the two incredibly kind ladies who have evaluated her before, came and did so today. And for the first time ever: she qualified, based on her lackings in areas. It's great that I didn't have to call doctors to get orders written so that she would get what she needs. It sucks that her lacking is becoming more evident. I do have to counter my "damn the man" speech here with the fact that the providers (her therapist) are not the issue. They are phenomenal. The bureaucracy part is where it gets messy.
So this afternoon I sit. Waiting. Waiting on doctors to return phone calls. Waiting for Abigail to wake up from nap. Waiting for her MRI next week. Waiting for results. Waiting to find out if she has mastocytosis. Waiting for my head to stop spinning so I can send out e-mails to her providers. Waiting to hear when we get to add occupational therapy to our mix. Waiting on life to return to normal...and by normal I mean?
Taking some me time,