Well it feels as though we just brought a new born home from the hospital. There is a lot to do around Alicia. The most difficult, I think, is staying on top with giving the meds, there is approx 15 meds but some have to be given 2 to 4 times per day and are supposed to be given by mouth (and that is difficult). Unlike Emily, Alicia does not like meds, it is a challenge to give them to her because as soon as she sees us coming with a syringe she closes her mouth and sometimes there is just no way that she will open it. If it wasn’t for the feeding tube I don’t know what we would do. Alongside the meds she also needs to be fed every four hours (day and night) and each feed takes one hour through the feeding pump. I am doing OK but Kathy is sleep deprived majorly. Don’t get me wrong I help as much as I can also.
Emily is doing fantastic! she is really playing the role of a big sister well, she is overprotective of Alicia and does not allow anyone to pick her up. She constantly brings to Alicia her favorite toys and recently even started reading (in her own way) stories to Alicia. Now that we are at home Emily feels very secure she is more happy, calm and relaxed. She sleeps better at night and mostly in her own room. Alicia also sleeps through out the night which is great.
Alicia’s first biopsy is scheduled for October 14th, on that day the doctors will insert a small tube through her neck and lead it to the heart where they will cut out a microscopic piece so that tests can be done to see if her body is not rejecting the heart. Doing a biopsy is the only way to see if her body is accepting her heart.
Take care for now
Mirek
