Here's the latest news...

We had an EEG on May 25, and Dr. Thompson called this morning to give me the news. He said the seizure activity has picked up again. Not as bad as his first EEG's, but it has increased a great deal from the last 3 EEG's. So, here we go again. I have NO idea how to keep beating this thing off, but we are going to do another 3 day IV steroid treatment. That has been the only treatment we have tried yet that has been a great success. We will go in on Tuesday (June 1) to start that. After the IV steroids Dr. Thompson wants to keep him on a higher dose of oral steroids for a little longer than we did this last round, and instead of tapering (which is what we have been doing) we will put him on the pulse again. The pulse steroids are taken 3 days a week on high doses instead of taking the meds everyday. Todd and I are concerned because how many times can you go back to doing IV steroids. It doesn't seem like it would be reasonable to do an IV steroid treatment every 3 or so months. That is something I need to talk to the doctor about.

Today I told Dray that he was going to the hospital again because the seizures started again, and that he would have to get an IV in his hand. He was totally calm about it and just told me that he wanted the IV to be in his hand and not in his arm (the PICC line) because the IV in his arm hurt him more. He signed the sweetest prayer too. He prayed, all on his own accord, that he could get better and that his seizures will stop. That was so sweet to me that he knew he could pray and ask for that. Today was bad news for us, but I have to say that lately I have had so many reminders of what a remarkable child Dray is. I had a meeting with the deaf school because Dray will need 1 of 2 situations for kindergarten next year: to go to the deaf school, or to have ASL services in his kindergarten class. We talked for more than an hour about Dray and it seemed like over and over they were astonished at his abilities for a child with such a disability. His ability to do so well academically and be able to understand sign so quickly. His teacher reminded me that he is academically well above most kids his age for kindergarten. I get so discouraged by his disability that I need to refocus on all of the things he is so capable of doing, and there are many!! This is difficult to face again. We have been seeing some signs of good progress lately, and I so hope we can stay on that road. He has been able to understand spoken language so much better lately. We have been teaching him so many new words and able to remind him of words he couldn't remember how to say. It really has been awesome. Pray that Dray and our family can keep moving forward. Hopefully we'll have better news for the next entry.