Heidi was tentatively diagnosed on October 3rd, 2013. The next three weeks until we received the blood test confirmation were a hell of dark uncertainty and trying to process all the horrible things we were told by her doctors that we could expect. We faced having to use a variety of medical equipment, including BiPAP, CoughAssist, a suctioning machine, and pulse oximeter. We were told she would need to have a food tube surgically placed quite soon and within a year or two would require oxygen to stay alive. October was the most devastating month.
My health was affected; on Halloween our psychologist sent us to the emergency room for physical symptoms I was having. They were going to hold me for an ultrasound, but we made an appointment with one of my doctors to have it done, then made our escape to try our best to enjoy what we had been told could be Heidi’s only Halloween!
That night Rick assembled a wagon that had been sent by Families of SMA. We quickly understood that we had a whole new family of people who had experienced day-to-day life as we were about to learn to.