Lily loves her LilyStrong wagon so much that she decided to take a nap in it after her walk yesterday evening. As you can see in the photo, Lily is quite puffy. She put on about 2 liters of extra fluid over the past few days. The good news is that Lily peed very well last night...almost a liter! We are hopeful the rest of the fluid will come off so Lily will feel better, preferably before her 5th birthday on Tuesday! Last night Lily started on hypertonic saline and albuterol breathing treatments. These treatments are being used to help clear the mucous from her lungs since Lily has heterotaxy and they suspect the cilia in her lungs does not function properly if at all. About a year ago, Lily was part of a study to check for cilia in her lungs, and the team will follow up with the doctor who ran this study tomorrow. I was warned that the hypertonic saline can cause a lot of violent coughing, however, the only person coughing up a lung so far is me. I plan to stand back a bit during her next treatment...holy moly! Today I am thankful for my husband, the unsung hero. Jacques is doing an amazing job caring for our other three daughters, working, keeping the house clean, doing laundry, taking Mackenzie to her appointments, while making sure he brings the girls to Washington DC at least every other day so that the girls can see Lily and I. Jacques and I are an amazing team. God knew exactly what he was doing when He put us together. With Jacques by my side, and God ever present, there is no such thing as an insurmountable challenge. Eucharisteo
Posted on: Sun, 20 Jul 2014 16:28:15 +0000