Hannah shows off her scattered skills -- she may not be able to clap or bang toys together, but she is able to sit at a desk and turn pages of a book she is really interested in!
I’ve decided to make some changes to Hannah’s therapy routine. Before this week, she was having PT and OT across town weekly (Mon & Wed) and developmental therapy here at home. The drive was really to and from the therapy clinic (30 minutes each way) was really getting to be too much for Hannah, especially since she has been so tired lately. It is almost like by the time we get there, she is so tired and does not want to participate.
We found a therapy clinic that is just 5 minutes from our house. We had our initial OT consultation today. It is a smaller office than the one we went to before. Even though Hannah was completely exhausted (for whatever reason she did not take a morning nap), she still was able to work with the new OT for about 20 minutes before falling asleep. She did not even complain!
It was a good consultation, and this new OT got Hannah to do something I have never been able to do. Get her to stack a block on top of another one (with some assistance)! Hannah stacked two blocks! The OT helped guide her hand, but it was just beautiful. Her nurse and I were so excited to see that.
The OT asked me the standard question “What do you hope to get out of occupational therapy? What are your goals for Hannah?” My answer sort of surprised her. I explained that I am very realistic as to the fact that Hannah has a very difficult time learning new things. Her skills are very scattered — most are at a 12-month level, but there are a very few that sneak in that are more age appropriate! I told her my goal is to keep trying to teach Hannah new things because the more neurons we create in her brain, the longer it will take for the disease to progress. The regular “goals” for occupational and physical therapy don’t apply to Hannah, at least as far as I am concerned.
Reality is: Her disease is killing the neurons in her brain for the most part. So whether or not it is true, logic tells me the more neurons she can make in the brain, the longer we have with her, which in turn, gives us more time for whatever may be on the horizon to help Hannah.
Next Tuesday we have our PT consultation at the same place. A 5-minute drive each way is so much better than a 30-minute drive each way!
That’s great that you found one closer. Much better for both of you. What was the OT’s answer or response to what you said? Did she agree or just stay shocked? That makes sense to me and I think it’s a great and realistic goal. Kisses to sweet Hannah.