Progress and decisions

This week has been a really busy week for Taylor (and us:). She's had daily therapy with Susan for 1.5- 2 hours and we're really seeing a lot of "tone reduction" - or simply, her tight muscles are loosening. I've also spent a lot of time researching various doctors, therapists, therapy techniques and programs - all in our quest to help Taylor. Here are a few interesting things that I've learned:

• There is disagreement amongst Boyer Clinic and Susan on the level of tone, or muscle tightness, that Taylor has. I took my strongest stand yet on Tuesday, when the Boyer physical therapist came to the house for Taylor's treatment and I had a frank conversation with her regarding my concerns. Because Susan is working so hard on helping Taylor loosen up and the Boyer therapy would essentially tighten her muscles again (we're trying to avoid uncomfortable functional skills like tummy time, etc. until Taylor's spasticity is largely gone), I told her that we could not do therapy with Taylor until she spoke with Susan and they agreed on an approach. It's bizarre to me, but Boyer doesn't think she has spasticity issues - I'm certainly no expert, but when she can't straighten her arms on her own, something is not right. We think we're making progress with Susan so we've encouraged Boyer to work with her on a complementary treatment program before we move forward.
• We also toured another educational program today at UW and we really liked it. Similar to Boyer, they offer various therapists (physical, occupational, speech, etc) and a preschool setting. Because we plan to supplement therapy with private therapists (like Susan), our primary concern is the preschool setting. The primary difference is that the UW program mixes "normal" kids and "developmentally delayed" kids - 60/40 split. We love this because Taylor would have an integrated environment (making the switch to a typical preschool or school someday easier; providing models of typical development; while ensuring that normal developmental milestones aren't lost - essentially pushing her to catch up). At Boyer, all of the kids are developmentally delayed and the preschool doesn't start until she's 18 months. At UW, she could start in September - 2 times a week for 90 minute sessions. During the class, the various therapists cycle through and the teachers are trained in special education. We really enjoyed our tour today and think the program shows lots of promise. We're going to think about it over the week-end because it would require a switch from Boyer, but so far, we like what we see and the program is highly regarded.

Our schedules are crazy right now - here is Taylor's day today:

• 8-9:30 - occupational therapy
• 9:45 - tour of UW program
• 11:00 - hip xray for possible orthotic casting (more on this later)
• 1:45 - vision therapy

The poor kid is wiped out. We're realizing that we need to get to a more sane schedule for all of us, but we're definitely feeling better about the level of aggressiveness that we're pursuing to help her. More to come later - I'm off to water ballet dress rehearsal - Lauren has a big performance tomorrow night!