Our household is very interesting right now. The kids continue to do well in school but we are attempting to get better results from Tyler and Samantha’s DBS surgeries by modifying their programming.

Tyler's left arm continues to be a problem and he has some facial dystonia with some pulling and some in his eyes. The very good sign is that Tyler seems to be putting on some weight. Through a combination of increased shakes and increased appetite which allows him to eat more during the daytime, he has had some weight gains. Unfortunately two days ago Tyler started having some cognitive issues at school with some loss of memory. When he came home we noticed that he had something that looked like an infection on top of his head and it was very sensitive. Michelle took Tyler into the hospital where the docs met them and agreed to get a CT scan done right away. The CT look good because there was no evidence of infection in the brain but there is an infection near the cap that holds the electrode onto the skull. This infection was eating away at the skin between the scalp and the skull. It was also inflamed and painful. Tyler came home with a supply of antibiotics and anti-inflammatory meds. He will go have surgery this Friday to clean up the skin and the cap area and hopefully get the infection under control. The cognitive issues we believe may have been caused by a different issue and possibly having three leads turned on at once with some overflow that causes different strange emotions and memory issues. The idea is to turn off the lead we just turned on and see if it eliminates the problem.

Samantha also had a rough week. She has been falling more as we chase her progression with programming of the dbs. She fell and banged her head pretty good on the marble counter top this week.

Our dog decided to shake the cartilage from his ears this week as well. He had to have surgery and it happened to be on the day that Tyler was taken to the hospital. Of course this was also traumatic for the kids who were crying and we needed to pick the dog up from the vet and keep a close eye on him. It was a really good financial week with thousands out of pocket for medical and veterinary expenses. We are still paying for the last dbs surgery. We are fortunate enough to make a good living but it is tough for us so I cannot image what other families do with children suffering from dystonia.

Lastly but not least, Luke started basketball. He played really well scoring five times in the first half. He came home and drew different lines on our court to practice for next week.