Celebration of the 2013 holidays was quite abbreviated. During November and December four trips to Orlando, Florida, were necessary to get Heidi into the ISIS clinical trial and get her initial treatments and assessments. We got the CoughAssist and suctioning machine just in time before she caught a cold. On December 27th Heidi had her food tube surgically placed and we were in the hospital for eleven days.
On January 6th, 2014, we left the hospital with a food pump and a BiPAP ventilator that we hoped we knew how to use correctly. We had also been hurriedly trained in percussive chest therapy and infant CPR. We entered 2014 with hopes that we had the skills and tools we would need to get through the year.