Wednesday, May 19, 2010
Sam has OT one time per week, and PT two times per week, and it looks like we are about to add ST (speech therapy) once a week too (more on that in a second). Yet, I read other blogs, and exchange messages with parents of other kiddos with various delays, and I always wonder, "are we doing enough?" Maybe that's the million dollar question EVERY parent asks, but its tough. Our doctors (particularly Super Doctor) have always been adamant that we keep doing the therapies, but only to the extent they don't overwhelm us OR Sammie B. We aren't really overwhelmed by them now, they've become our new normal. It helps (me, particularly) that our nanny takes Sam to some of the appointments (I go to one PT per week, Brian goes to the other, and our nanny goes to all the sessions so that she sees how to best work with Sammie B during the days). But, after our last appointment with Super Doctor (which I never posted about, we just talked a lot about her pursuit dysfunction -- the neuro-eye issue, how this + low-tone affects her ability to move, etc. -- just a TWO-hour talking appointment where Super Doctor answered ALL our our questions), we've sort of recommitted ourselves to THERAPY. Super Doctor thinks her trunk tone has come very very far, but her arms and legs are still very low-tone and weak. I think we'd (as in me and B) gotten a little lazy. We haven't been working and just want to play (and relax!). So, we are trying to find ways to do both. We'd noticed that we'd been working SO much on standing that now Sammie B's arms seem weaker, so we are doing new things to work those. We also felt like our PT had fallen into a rutt, and each session was same-old; same-old, so we talked to her about shaking things up as well. We've ALL sort of fallen prey to the sweet Sammie B's smiles and whines, and not made her work through the whining. It's hard to work her so hard, but we all know its in her best interest, so we are trying trying. Now, we won't make her "work" if she's sobbing, but whining, yes. That's a tough thing to do as a parent.
B and I are also starting to look for some alternative-type therapies. I've read AMAZING things about aquatic therapy, and while we haven't found any aquatic therapists, we have found a swim instructor that's worked with babies with various muscular issues. Sam LOVES the water, and we think that would be a great way for her to do something that is both "work" + fun.
I think we all feel rejuvenated and excited about our new "commitment" and our new ideas. We hope Sammie B enjoys them all!
We also had our 18-month speech assessment with the RC yesterday. Neither Sam's pediatrician nor Super Doctor has been concerned about her speech (she babbles a ton, but few words) but they said speech therapy isn't too taxing on kids, and is generally fun, so if we get it, take it. . . I of course HATE HATE the evaluations, so I was nervous, but since both doctors had been so laid back about it, I figured I'd take it all with a grain of salt, and try to look at it as just getting an additional resource and not someone "evaluating" my child. Well, the results were pretty much exactly what we expected. Her expressive communication is slightly delayed, she communicates a ton non-verbally, and definitely has ways of showing us what she wants/needs, but most babes her age have more words. This is likely just due to her low-tone and coordination issues, and we'll work on them. And, her receptive communication is actually a little ahead of her age. I've always told people I KNOW she understands EVERYTHING, and our doctors have agreed, but sometimes, I can't kick the feeling that people underestimate her because of her physical limitations, and I feel all defensive and mama-bearish when that happens (I imagine this happens to many people with physical limitations--people assume things about their mental capacity as well). . . Anyway, that's that. We think we'll get speech therapy once a week, to add to our already busy busy week. And we'll throw some swimming therapy in a few times over the summer (we want them to just come out and show us how to work with her, this won't be a weekly thing).
So here's to new commitment, new efforts, and optimism! And here's to our hard-working little Bean!