Breakthrough

What a real roller coaster ride this has been. We were feeling very frustrated last week with Jolie's progress and felt we needed to make some changes. We knew that adding another medication was an option but we were very nervous about it because most of these medications have some pretty serious side effects and she is already suffering the side effects of the ACTH. After a lot of praying we felt that adding another medication was the right thing to do, but we did not know which medication would be best for Jolie so we also prayed that Dr Laoprasert would be inspired to choose the best one for her. The following day Ryan, Macey and Connor left for Chase's wedding and Jolie and I went to see Dr. Laoprasert, Jolie's neurologist. I told him what we wanted to do and he agreed. The medication he chose for her has a small chance of causing some retinal damage but as Ryan and I discussed this we still felt it was the right choice for her. The medicine had to be shipped from Canada and would take a week. He could see I was desperate to get started so he called the mother of one of his other patients and she very generously offered to give us some of their medication to use until Jolie's arrived. As most of you know we are very lucky to have Dr. Laoprasert as Jolie's doctor because he one of the best if not the best in his field, but we are also very lucky to have him because he is one of the kindest and most compassionate men we have met. The next day which was the 16th of April, I went to pick up the medicine, this family was so nice to invite me into their home. I had many question's and they patiently answered them all. I was able to meet their beautiful son Max and hear his amazing story. They too had nothing but praise for Dr. Laoprasert. We started Jolie on her new medication that night and have not seen a seizure since!!!! We saw Dr. Laoprasert again on Wednesday, we were all smiles when he walked in the room. He said her EEG showed the biggest improvement he has seen since we started seeing him. He also said he has never had a patient respond to a medication so quickly. So what's the next step? Jolie will have a PET scan on the 12th of May to see if they can find any lesions on her brain. If they do find something they will only perform the surgery to remove the lesion if her seizures come back. We are starting to ween her off the ACTH....YEA!!!!!! She should be totally off by the end of May if things go well. We will continue working with her doctors and physical therapist and pray that she will make a full recovery. We just want you all to know that Heavenly Father is hearing all of the prayers that have been offered for Jolie and is blessing us and guiding us. We love you all so much and thank you for your continued prayers for our sweet baby.