We made it to physical therapy today. We haven’t been there in 3 weeks because of the Disney trip and then the subsequent trachiitis that knocked her out.
When we got there, Hannah’s PT brought us into a side room and told us that their corporate office is becoming more strict on missed sessions. Reality is that we only go to PT when Hannah is awake and up for it. There is no reason to wake her up or go when she isn’t feeling well because she won’t do anything except cry and get upset.
Our PT’s office has been really understanding since day 1, understanding the fragile nature of Hannah’s condition and the reasons why she can’t always make it. But apparently their corporate office is not so understanding.
Her PT suggested strongly that we go to “on call” status. Basically, I call on Monday mornings and see what cancellations they have (which seems to be quite a few) and pick a time that would work for Hannah. This actually would work well for us because it gives us the opportunity to get her speech, OT, and PT if there is availability instead of just PT.
It isn’t the most ideal situation because she doesn’t get a set therapy time, but the reality is that she can’t keep a set therapy time no matter how hard we try. She will only do well in therapy when she is feeling well. We can’t tell her to suck it up or make her do anything she doesn’t want to because she just can’t comprehend that.
We still have our twice monthly PT with early intervention which has been wonderful and we are hopefully going to get twice monthly OT through early intervention (now that they have hired more OTs).
It isn’t enough therapy for her. But we only have so many options because of Hannah’s tolerance.
We have our school district evaluation next week which will include PT, OT, and speech. It will help the school district, Daddy, and I come up with a good IEP plan for Hannah when the school district takes over her care in August.
Not thrilled with not being able to get her regular therapy services, but we are having an incredibly difficult time finding home therapists who will work with Hannah here. Because we have primary private insurance and only secondary medicaid, we can’t find anyone who will take private insurance. If she had primary medicaid, we would have quite a few possibilities. But for now, it really is up to Daddy, Hannah’s nurses, and I to therapeutically work with her for the most part.
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