Lily’s heart has remained stable and she continues to heal from her ICD surgery –we hope to be able to resume therapy with her left shoulder in another couple weeks. We continue to wait for the results of her genetic test for CPVT, we should know in another couple weeks. The results wont change any routine for Lily but if does come back positive we know that we need to to test her sister, Charlotte.
We continue to keep Lily as active as possible. We get her out of bed as much as possible . . . she basically only sleeps in her bed, just what her doctor ordered. She takes multiple strolls in her wheelchair daily, outside on a short stretch of sidewalk, back-and-forth and through the halls, she’s on the floor mat getting stretched and we sit and work on trunk and head control. For the most part she seems to enjoy her time out of bed by being calm. Her doctors are in the process of finding a better plan with her multiple medications and feedings. We are trying to eliminate some of her agitation medications and keep her on just one; vallum. They’re also trying to consolidate her feeds so she can be off the food pump during the day.
Jim and I (with help of a couple Angels, Lori & Nancy) are activity searching for Lily’s next home. We know our days are numbered here at CHOC so we need to figure out what’s next. We are looking for the best rehab facility for Lily; where she’ll be inpatient and get the aggressive therapy 6 days a week that she needs. We are continually reminded that the first 3 months are critical after a TBI (traumatic brain injury) and were are already into our 6th week. The clock is ticking. Please keep her in your prayers, she has a LONG, LONG road ahead of her. We all do. Thank you for your continued support and prayers. For your healthy meals, cards, fury friends, etc. And to those who leave envelopes with money anonymously . . . you know who you are. You are too kind. Please do not feel like Lily needs money. . . but just know that any money left for her will be put into a savings account for now. The money will go to an existing foundation or perhaps we will start her own that raises awareness for Sudden Cardiac Arrest in hope that we can save a child’s life. Lily has such a “ginormous” heart for others and this is something that would mean a
lot to her.