Jacob met his new occupational therapist, Helene, Wednesday afternoon. I like her very much and she seems very knowledgeable regarding neurological issues and therapies. Helene tested and measured Jacob's hands and he will resume weekly appointments after he recovers from the surgery next week. I’m guessing (hoping) around week four post-op. He was able to start back with Judy for his hands around this time after his spinal surgery in August.
After therapy and picking up Brie from school, we made our way to Orlando. The four hour ride to Orlando always feels so long after having a full day and I really dislike the Turnpike in the dark. There are many places that are very dark. I’ve been fighting the feeling of not liking to drive at night because I don't want to sound like my parents, but I really do not like it. The on- coming lights are bright and it’s just tiring. It doesn't help that my glasses were in my stolen purse in October and I have not yet replaced them.
Our room at the Ronald McDonald House was interesting. It was called the "Emmett Smith Toast." Although I am NOT a Gator or Cowboy fan, I do like Emmett Smith. I have very fond memories watching him play in the Swamp when I was a little girl. And although I am a die- hard FSU fan, my first college games were with my best friends at University of Florida. Regardless of these special memories, I found it a bit creepy to have a room full of Smith's portraits. On every wall. Staring at us. All night. I think Jacob counted 8 different photos of the Hall of Famer. Anyway, we are always thankful to have a room we can afford at the RMH and would gladly spend many nights with Emmett! :)
Thursday was long. Very long. Jacob's first appointment was at the Heart Institute. He had an echo-cardiogram and EKG. We found out later that both tests showed that his heart is healthy. I need to get a copy of these reports in anticipation that the pain medications Jacob will be given after surgery next week will surely send his heart-rate soaring. Obviously I’m worried about this happening again. I had a nightmare this morning about the doctor coming in to tell me that something was wrong with Jacob's heart. It will be good to have proof that there is not!
After breakfast, RMH clean up and the playroom, we enjoyed lunch at Chic-fil-a and a visit from the lovely Olivia, Orlando's Moms RUN This Town fearless chapter leader! I was so excited to see her and it was really cool that we were both wearing our Sandy Hook MRTT fundraiser shirts without planning it. Gavin had a great time playing with several other kids in the playroom, burning off a small supernova of energy.
Jacob's clinic appointment wasn't until 2:30 and lasted until 4:30, which isn't long considering some of the appointment lengths (or waits) over the years, but with a four-hour drive home, these afternoon appointments get late. We learned that Jacob can continue on the lapatinib until the day before surgery and can resume it ten days later. We will wait to see how Jacob is doing to decide if ten days post op is a good time to resume the chemo. We also talked about his weight loss and will try a new seizure drug after her recovers from surgery. Jacob's labs looked perfect and his liver function is healthy.
Our drive home was an adventure, but with hopes of not boring you with more unwanted details, I will just say we got home at 9:30 pm and we are happy to have survived another day in this crazy life. Jacob and Brie are at their dad's this weekend and will be home Sunday evening. Monday will be a nice holiday for us all to relax and hang out together before next week’s chaos. Brie got her braces off last week. She looks beautiful! Tomorrow, she will get her final retainer to keep for her lifetime. Dr. Cummings did a fantastic job and her braces were worth every bit of the $4,500!! Jacob is going on year three with his on, but I'm pretty sure he won't go to college in them! Jacob, Gavin and I will be leaving early Wednesday morning for Gainesville. Jacob's pre op is at 11:00 and we will get details then. I’ve been asked about the length of surgery, how the fusion will be preformed, how many days Jacob will be in the hospital and other similar questions. I don't have any definite answers and will write a post Wednesday night to update everyone! Until then I hope you all enjoy your three day weekend and start your week off well.