Charles surgeon is Dr. Brent O'Neil. He was great. With the help of the Robot, he placed 14 leads into Charles' brain, which entails drilling 14 holes into Charles head and placing a BOLT above each hole, then sliding a platinum lead into each hole which has 10-16 sensors in each one (making Charles attached to 177 wires at the base of his equipment).
Then, the EEG team (led by Dr. Laoprasert) on the EMU (electronic monitoring unit) watched Charles for a full week for brain activity, including a 5 hour stimulation mid-week which he ROCKED. Charles had a pretty cool week, as rough as it was (lots of pain, seizures, wound pain, etc.). He had the band, Dearling, perform in his room, and then the cool program Bags of Fun delivered a backpack FULL of fun presents, games, books, kindle fire, etc. It was AMAZING. It's a program designed for children with life threatening illnesses by a mother of a 6 year old who lost her daughter to cancer several years ago. He was pretty darn excited. It came at just the right time when Charles desperately wanted to go home. I stayed the whole week with him at the hospital (he can't be alone on the EMU floor for even a minute).
Charles also had LOTS of cards to read. He received 140 cards! 70 from classmates and 70 from friends and family through the hospital's on-line card delivery service, as well as 3-4 beautiful handmade cards mailed to his house (Thanks Bernadine!). I am grateful for all the love and support and prayers from SO many friends and family (and some complete strangers) on his behalf. Charles is home now from the hospital and is currently enjoying day 4 of no seizures. There is a phenomenon where if you introduce foreign objects into the brain, you can have temporary loss of seizures, which has been a welcomed break.
And, now, we are currently awaiting his surgery for a brain resection where Dr. O'Neil will remove the section of the brain that is causing the seizures. It is scheduled for May 19, but there is a possible opening on April 14, so we will wait and see if they could be ready by then...there is a LOT of preparation that goes into planning these surgeries, as you can imagine.
Thursday, March 23, 2017
Tuesday, March 21, 2017
Meet Dr. Laoprasert - Photoshoot with Coryn Nelson
Meet Dr. Pramote Laoprasert - Charles' Epileptologist. Dr. Laoprasert is VERY smart, and so wonderful with Charles. When it became evident in September that Charles case was very rare and difficult he took over, citing "he only takes the most challenging cases". He has done 200 hours of research on Charles case and there is basically NO case like Charles. There is no records or history in textbooks, etc. about PAIN seizures, and the location of his seizure source/lesion, etc. And, definitely no one who has had a Stereo EEG in those locations. SEEG is a fairly new technology. Europe has been doing them for 40-50 years. But, the US has only been doing them for 8 years. There are only 3-4 Rosa Robots that can assist in a Stereo EEG, and Colorado Children's Hospital is one of them (they are also in Boston and Cleveland Clinic, so glad we didn't have to travel for that).
Dr. Laoprasert wanted Charles to have a SEEG to pinpoint the exact location of his seizures. He was at the hospital every day, all day with Charles (across the hall, monitoring his EEGs) for 7 days. He works SO hard and is SO dedicated to Charles and his future. He has commented MANY MANY times how smart and special Charles is.
I will post next about the hospital stay, but in the meantime, here is Dr. Laoprasert with Charles. Special Thank you to Coryn Nelson for coming to the hospital to photograph Charles and his journey. More pics to come this year! http://corynnelsonphotography.com/
Dr. Laoprasert wanted Charles to have a SEEG to pinpoint the exact location of his seizures. He was at the hospital every day, all day with Charles (across the hall, monitoring his EEGs) for 7 days. He works SO hard and is SO dedicated to Charles and his future. He has commented MANY MANY times how smart and special Charles is.
I will post next about the hospital stay, but in the meantime, here is Dr. Laoprasert with Charles. Special Thank you to Coryn Nelson for coming to the hospital to photograph Charles and his journey. More pics to come this year! http://corynnelsonphotography.com/
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