The next day we went in for the MRI and MRS. I am sure we all know what a MRI is, but the MRS was a new one for me. I have yet to spend some time researching it, but I understand that it measures the levels of certain chemicals in the brain. The study is trying to determine of the chemicals are leading indicators of the rate of progression of the deterioration of the affected area of the brain. I plan to research the MRS in more detail. The only "ouchie" as Amanda would call it was the IV. They once again had to give her an IV to sedate her. This set of scans took about 1 1/2 hours and she did great. They used earplugs and earmuffs on her so the loud MRI did not wake her as it has done in the past.

Later that day we sat down with Dr. Chugani to review the results of the PET scan. He showed us the scan and said that she was using very little of the effected area of her brain and that was a plus for her. She has apparently learned the abilities normally associated with those effected areas in other parts of her brain. I understand your brain is much more plastic when you are young so it is better for the area that is effected by the lesion (and essentially destined to die) to deteriorate rapidly so the other areas have the greatest chance to take over those functions. He said her frontal lobe and temporal lobe were relative unaffected so Amanda probably will never have to have a hemisphereectomey, resective would probably be all she would need if her seizures ever became uncontrollable. He also said that her motor strip was intact and that was also good news.

All in all we were very pleased with the information that the study has provided us and we are anxious to return next year and the year after to see how she is doing. I also must add that the staff at the hospital was top notch. Theresa was especially understanding and patient. Both Dr. Juhasz and Dr. Chugani make you feel comfortable with their explanations that anyone can understand. Thank you everyone in Detroit!


We also got to meet up with the Delaneys for dinner one night. Fred and Kasey have a daughter with SWS. Maddy is also doing terrific like Amanda and seems to be relative unaffected by her condition. She was 17 months when we saw them and the perfect playmate for Amanda. We were able to discuss Maddy's laser treatment which put us at ease since we had an appointment scheduled for just a few weeks later. I only wish Maddy and Amanda had more time to play together. Maybe next year!
Derm appt.

In the next weeks I plan to try scanning in Amanda's PET scan and I will also update you on her laser treatments that she hopefully will be starting soon.