It’s been a busy and challenging summer, though thankfully Heidi has been healthy for most of it. She continues to grow stronger (and heavier!). She turned three at the end of June and had a wonderful birthday, complete with her siblings, a movie and picking out her own present at the mall. Heidi continues to make progress and gain strength. The company that developed Nusinersen announced on August 1st that it will file for FDA approval and implement an Expanded Access Program for the drug prior to approval. Rick and I spoke to Heidi’s doctor in Orlando about the implementation of the EAP. The issues are complex and I pray that careful consideration of them will result in as fair of an implementation of the program as possible. SMA can’t wait any longer.
Heidi received a dose of Nusinersen on the Tuesday after Labor Day in Orlando, where we enjoyed a brief vacation. She came home with a cold, but her cough seems stronger and more productive. It’s been an exhausting few nights of CoughAssisting her throughout the night, then dragging through the following day at work. I think she has turned the corner for the better, though, and I look forward to more restful nights.
At the beginning of the summer I began working on litigation support projects outside the home and deeply miss the time I had at home with Heidi, as well as extra time I had in managing her care, her appointments and interacting with her therapists. Rick began working at Lowe’s until he gets another job in his field and his hours are unpredictable. My opportunities to get to church with Cassie have decreased due to the unpredictability of our schedules and I’ve missed the church community. I have been able to attend a couple of evening meetings with a support group that helps me deal with challenges related to Heidi’s condition and otherwise. Writing’s still the best therapy, though, and I’ve begun working on another book.
Time for promoting my book, Juncture at the Still Point, has been affected by events of the past few months, but sales are steadily increasing. I’ve learned that “key words” on Amazon are indeed key to sales and plan to publish a couple of novels I had written pre-Heidi, as well as the nonfiction book I’m working on now, under pseudonyms. It will be an interesting experiment.
Garyn turns 24 at the end of this week. We will be celebrate her birthday on Friday. With the holiday season soon coming, I’m so looking forward to Heidi enjoying Halloween and Christmas! This is the first year Heidi will really be able to understand what’s going on with the holidays. She’s already gearing up for Halloween, binge watching episodes of Casper and practicing her “spooky” noises. I hope it’s going to be a real treat for all of us.
Wishes to family and friends for a wonderful fall season and thanks to everyone who has kept Heidi in their thoughts and prayers.