July was a hectic month for us. Tim had to travel for work one week. Our day nurse had 2 weeks off (luckily not the week Tim was gone) and our night nurse had a week off. There were 2 weekends our weekend night nurse had vacation too. I really miss Tim and our nurses when they are not here. August is getting back on schedule. We are still catching up a little on things that got pushed off last month, but we are close to being back.
On Monday Casey had a fun outing. One of her nurses and I took her to a place where she was able to paint and decorate her own pottery. They had mosaics as well, but Casey wanted to paint not tile. She painted a lovely bowl for her Daddy’s birthday. We will pick it up on Saturday. She liked that we went on a “Secret Mission” too. She didn’t tell him about it until his birthday. It was really cute.
Last week Casey had a neuro appointment. It was just a follow-up. We did end up changing and adding some new medications to try and help with stiffness and seizures. We are slowly ramping up the dose. It will take 6 weeks to get to her full dose. So far it is too soon to tell if it is going to help or not.
Casey got fitted for new AFOs this week. She picked purple butterflies this time. We should be able to get them in about 2 weeks. Her last pair just did not work for her. I hope this pair does better.
School starts later this month. I am sure I will start working with her school in the next few weeks to get her new schedule worked out. I think we are going to start with 4 hours a week (2, 2 hour sessions) then build to 6 hours. That means we need to go school shopping too. Casey loves to buy clothes. She is such a little fashionista.
That’s about it for now. As always, we hope everyone is well.