We had an EEG for Dray May 18th, but it took so long for us to get the full results back from Dr. Chez, due to USPS issues and Dr. Chez being out of town. But, I was confident he was going to tell us that his EEG was still clear because I saw it and it looked so good. So here we are at almost 9 months of cleared EEG's.... seizure free! Dr. Chez a few months ago had said that when it has been a year we'll see the biggest changes. He is still on the same meds: zarontin, depakote, and namenda. He has cut back on speech therapy from 2 hours per week to 1 hour per week. Melanie, our beloved speech therapist, suggested the cut back. She felt he was doing much better and would benefit as much from just the 1 hour. Still a long road ahead for him...
I have to say that although I'm incredibly grateful each day that we have, for 9 months, conquered this disease I am constantly on a roller coaster of what I think his outcome will be. More times than not I know that if he stays on this course he will be fine in a few years. I know that he will for a very long time, if not all of his life, have learning disabilities. His auditory memory is horrific. He struggles to remember new words he is learning, although this is much better than before, it is still hard for him. A lot of times he can repeat new words, but still with a lot of complex words it takes a few tries or it's just off a little. He really struggles to remember songs, phone numbers, and counting is difficult for him. He does fine if he can sign it, but trying to just say it can be a struggle. Everything takes longer for him and what you think he understands one day can either be forgotten or misunderstood the next day. I think I have to see the much smaller steps he has taken and not get lost in the thinking of how he is different from other kids or how long it takes to understand a concept that is easily understood if your brain is working correctly. But, he is on a good path, and when I look at where he has come from I know that there have been changes for the better and his language and comprehension is ever so slowly coming back to him. Patience with something that comes so easily to all of us and is just a "given " for all children is and will be our challenge to overcome. If I had to choose two words that get me through LKS it would be patience and faith. I need both of those virtues to face this on a daily basis.
I recently read a book titled, "Search for Tomorrow" by Keith Mason. The book was about Colleen Mason, who at the age of 3 lost all of her language due to LKS. I recommend it because this family was an amazing example of NEVER giving up on a child with this condition. Colleen did not speak for 2 years, but they kept searching for answers and solutions, and moved their family anywhere they had to for the best schooling and therapy. This was at a time when LKS was unknown and there were no medications. I look at all of the schools and teachers that we have in place to make Dray's life and recovery as wonderful as possible. Colleen had those same amazing people in her life, and I know this will be a major part of Dray's recovery, just like Colleen. Colleen graduated from college, was an All-American track runner, got married and has 4 kids. These are the things that I want for Dray. Simply... for him to have a family and be able to provide and give his love to them, and receive love back. I am so grateful for all of the people in his life that make this dream of mine even a possibility that I can dream about. I also know that anything is possible with God and I put my faith in Him that He will give Dray all that He needs to overcome and be on the path that God wants him to be on. I just hope that I am aware and prayerful enough to do His will, as a parent, for Dray.
Enjoy our pictures of Disneyland. Dray loved it! What an awesome time we had and we so loved spending time with him and the girls. Great memories!! I wish I could post all of the pictures. I hope to continue to have good news from here on out!
P.S. I get so many great comments from moms of other LKS children. I would LOVE to communicate and share more with you, but I am not the best at responding to comments on the blog. If you would like to email that would be better, and I really would love to share even more! My email is kerrideshler@yaoo.com
