Surgery Follow-Up

James had his post-surgery follow-up appointment on Monday. The ENT said everything was healing perfectly. His ears, nose, and throat all look wonderful. The doctor gave us a recommendation for a doctor that does Botox in the salivary glands to help with secretions. We had never heard of this, but we’re willing to give it a shot. Stacy gave her a call Monday afternoon and setup an appointment in a couple of weeks.

Orthopedist

On Tuesday James went to see a new orthopedist, and she recommended that James wear a thoracic-lumbar-sacral orthosis (TLSO) to help with his scoliosis. She said that it’s pretty bad for his age. A TLSO is a brace that is worn around the torso that should help keep his back straighter.

On the way home from the orthopedist, we dropped off James’ paperwork for preschool. He will probably start school after Labor Day. We are so not ready for this!

Video EEG

Tomorrow James has a 24- or 36-hour VEEG (video EEG) at the hospital. We’re really hoping they find something. He is currently averaging about 20 seizures a day, and we know that he is aware of them. He cries every time he has one. It’s painful and heartbreaking for us to watch and not be able to do anything. He’s taking four anti-seizure medications and he’s still having seizures. We’ve got to find something (or someone) that can take these damn things away from him. Here is a video Stacy took of James crying after a seizure:

 

 

Hopefully I’ll have something good to share about the VEEG in my next post. Keep your fingers crossed and say a few prayers for James.