Sometimes small mistakes can make for very long days! Once we check into the hospital at 8:00am the nurse does a wellness check and then releases the order for the enzymes. The pharmacy then takes it out of the freezer and lets it thaw, this takes about 45 minutes. For some reason they only took out Josef’s dose and didn’t catch it until after they accessed both kids. This added another couple of hours to our day, tracking the mistake down in the system, getting the pharmacy to defrost the meds and get it up to us.
Each access gets a little easier, the kids sit a little stiller, they are getting use to being stuck in bed all day. We just make sure they have out full attention and lots of cuddles.
Claire is not doing great at school, this new schedule, even though its only half days has her tired all the time. We are going to be making some changes to and getting new equipment to make mobility easier for her and hopefully not drain all her energy. Having this bulky equipment in this house is hard and its an obvious sign of how this disease is changing her life.