California Children's Services (CCS) pow-wow

Yesterday, we had a big assessment pow-wow at our local California Children's Services (CCS) facility. CCS is a California state program for children with certain diseases or health problems — SMA is one of those diseases. Although CCS provides many services, we're initially focused on getting access to more physical and occupational therapy and adaptive and assistive technologies for Gwendolyn.

CCS physical and occupational therapists have been to our house several times in the past, but we have been frustrated by the regularity of those visits and CCS has clearly indicated that to receive the highest level of care we're going to have to bring Gwendolyn to their facility. They have a relatively large and modern facility in Santa Barbara, but to date we have been resistant to the idea of taking Gwendolyn there on a regular basis largely due to the risk of exposing Gwendolyn to viruses, etc. One thing that we definitely accomplished yesterday was that Victoria and I were able to get a better feel for the environment that we'd be taking Gwendolyn into. As with everything along this journey, there are calculated risks associated with every decision we make and we have found that taking baby steps is usually best for us and for Gwendolyn. We appreciate that CCS has acknowledged our concerns and has offered to take Gwendolyn as the first appointment in the mornings to minimize exposure. We are looking forward to our first appointment at the CCS facility in two weeks.

We also received another encouraging data point from CCS indicating that we will have access to MANY more services once we get Gwendolyn approved and enrolled into the Medi-CAL program. That process is…in process…