More EEG results...

I took Dray to speech therapy the other day, and Melanie (his speech therapist) asked if we had his April 20th EEG results back. I usually call Dr. Thompson about a week later to get the results, so I told her I would be calling him the next day. But, then she realized that she could get access his records through the IHC computer system, and got the results for me. The seizure activity is still looking good and holding at about the same level, maybe a little better. The seizure activity is very infrequent. Todd and I's next question is how to get rid of them completely. I did ask Dr. Thompson this question the last time we talked, but he seemed to think that would be difficult to accomplish that at this stage. He mentioned that in his opinion seeing this kind of EEG was exactly what he was hoping for. He also did not want to, at this point, fiddle with new medications before we got him in a completely stable place with the steroids. We need to know that the steroids will hold him at this level. But, I will be persistent in this no matter how impossible that dream may be. Well, right now it feels like a dream to have that. Although, we never give up.

The unfortunate part of all of this is that my worst fear, well almost worst fear, is happening. It's one thing to get the seizure activity under control, and it's another thing to see actual real improvement in language. My fear has always been that we would get this under control and that we wouldn't see improvements. That is how I feel at the moment. I don't see a big change in him. He is not really showing improvement at all. He's basically stuck where he has been since about the summer of 2009. Of course, there has been highs and lows, but always about the same level of speech. He just isn't really understanding people yet, and he is not really talking much more coherently and fluently. He just isn't using language very effectively beyond just getting something he wants. I have been told it takes some time, but on the other hand I have heard of other people's children having quick improvements. So, I feel great anxiety and stress over our lack of improvement.

But, I will end this on a good note. Dray is picking up reading MUCH better than I ever expected. If I show him a new word and we sound it out with him looking at the letters... it is so much easier for him to say it. So, he has started reading little beginner books, which he just picks up really fast. I decided the other night that reading will be a great way for him to learn conversation and sentence structure. I have written out little simple conversations that he can read. He just needs help with how to say things in full and complete sentences and how to respond to others in an appropriate way. He does okay with this for the most part, but he has a strong tendency to not use sentences, and to just jargon with one word responses and comments. We tried it for the first time last night, and it went well for his first time. We are always trying something new, and eventually something will click for him.

Check out Dray's final ski trip... he is an awesome skiier!! Well, for only being able to go skiing about 3 times this year.

I have been hesitant to spread the good news, but....

Here's the good news... no it's GREAT news!! We went to the hospital for 6 days total with a 4 day break in between. Dray was on IV steroids for 9 doses each stay. When he was on steroids orally he was on 2 mg/kilo, but on the IV steroids it was 20 mg/kilo.... huge difference in dosage. But, they did an EEG on our last night there, and the continuous spike wave pattern was broken. Seizure activity reduced by 90%. I was really excited, but since it was done on a night when he was on such high doses and he would be going home to a much reduced oral dose. I was hesitant to really believe we could celebrate. But, I just got the EEG results from this past weekend (April 2), and his EEG looked just as good, a little better even.

The good news for all of you is that you don't have to hear my complaining and ranting this time, and I can celebrate Dray's little victory. This isn't by far over for him, but we have reached a MAJOR milestone in all of this. I know how many of you pray for Dray continually... thank you. I also have to write about my amazing parents, and parents-in-law. My mom and dad do whatever needs to be done to make sure my life is just that much better through all of this. The hours they put in watching kids while we are at the hospital with Dray is such a blessing. My mother-in-law, Carol, came to Utah for a total of 3 weeks to help me out. If you know Carol I don't need to say too much about what a great help she is. She is relentless in her helpfulness... in a good way, of course. My two brothers (Rex and Aaron) came from Texas to be here for help, support, and to spend time with the kids during this crazy time. That was so awesome.... the kids loved it!! We continually pray that this will stay, that he will gradually keep improving, and we can soon enjoy Dray more than we already do. He really is a crowd pleaser, such an amazing child. Well, I hope I have expressed gratitude enough for this wonderful news and to wonderful people that I love!!