Another exciting and busy summer! Since the SMA conference and trip to Florida in June, we spent a wonderful week in the mountains at Camp New Hope and returned to Florida again in August for Heidi to get the ISIS trial drug. Maybe we did just a bit too much… we have vowed that next summer won’t be so hectic. Heidi continues to respond to the trial drug. She does not require ventilation. She moves more, manages her secretions, has good head control and can sit with support. Though generally happy, she is definitely in her Terrible Twos! Like any two-year-old she fusses when she is frustrated in her communications or doesn’t get her way. But she has it pretty good and, for the most part, she knows it!
Cassie has started back to school and things are settling down. I’ve completed my book about Heidi and the year following her diagnosis, Juncture at the Still Point. It is being reviewed and the plan is for it to be published in early 2016.
Now we head into the autumn and look forward to cooler weather! Here are some pics of good times over the last couple of months: