Thanks to everyone for the thoughts and prayers in response to our last post.
Callie is still not feeling very well. Managing her secretions has been a constant battle over the past few days. We’re grateful to have medical equipment at home for this purpose.
But to win this battle with allergies or whatever it is that’s causing so much trouble, we’re starting to think Callie will need more help than we can give her at home. We’ll be checking in with her primary care physician Monday to see what he thinks.
Good news includes that she hasn’t had much of a fever and that her oxygen saturation level hasn’t dipped to dangerous levels. We’re still hoping to get Callie past this trouble without needing a hospital visit. But, of course, we’ll do whatever is best for her.
Thanks, again, for reading our updates. We’ll post again within a few days or as things change.
Since our last post six weeks or so ago, Callie has been doing well. We traveled to Washington, D.C., in early May for the Fight SMA annual conference. Nathan and the children enjoyed exploring the city, and the conference gave us a chance to speak to several SMA experts, which come in the form of doctors and parents.
One of those parents was Bill Strong, father of Gwendolyn Strong. Bill and Victoria Strong have been excellent role models for us as we’ve been learning how to help Callie not only survive but enjoy living.
Nathan is “seriously considering” joining the Gwendolyn Strong Foundation team for the Santa Barbara Marathon in November to raise money for SMA research. When he’s officially committed to running we’ll be posting more information in case anyone’s interested in sponsoring Nathan (and Callie) in the run.
Although Callie’s health has been good overall, we are a little on edge tonight. A couple of days ago, Callie had a small cough. Since our entire family has been ravaged by allergies, we did extra cough-assist for her and some allergy medicines.
Yesterday, however, Callie woke up not feeling like herself. She had an elevated heart rate and a slight fever. Her doctor immediately put her on antibiotics, and she seemed to be bouncing back.
Tonight, she asked to sleep with her “mask”–her bipap–something she hasn’t done since she was hospitalized.
Naturally, this makes us nervous as we’ve seen how rapidly Callie’s health can decline. We appreciate your thoughts and prayers as we navigate the next few days. We’ll post again soon to share how Callie’s doing.