We’ve had a busy couple weeks. We made the decision to transition Sienna’s Pulmonolgy & ENT care at CHOP in Philadelphia so we spent the weekend there before her appointment on the 29th of April. This children’s hospital is well known for their lung/ trach patients and we felt strongly that Sienna needed her care there as her lungs are her main problem right now & trying to get her off this vent. We loved her new pulmonologist and have a plan in place for weaning the ventilator! Of course, as always, Sienna is the “driver of the bus” and will determine how fast or how slow the weaning will go but it is exciting that we have an actual plan in place. 

Sienna had another follow up echocardiogram today at CHONY and it continued to look unchanged which is great news! The melody valve is working wonderfully and she doesn’t have to go back for 6 whole weeks🥳 We will also begin to very slowly wean her diuretic over the course of the next couple of weeks. Sienna is still on 1 diuretic and cardiology feels that because her heart is doing well, it is time to start slowly weaning to the small dose that she will stay on for some time.

Otherwise it’s been the usual therapies and getting outside as much as we can with the good weather. Sienna also began a weekly music class and we continue to go to story time! It is so nice to finally have her around other children her age. It is unbelievable that she will be turning TWO in a month and a half. 😭

💜The Caines Family