I have been asked by a few people how Ryan is doing because they've been on this site to check on him and nothing had been added since February. Wow, where does the time go? I just read the last update and those were some serious weeks. I did buy a monitor and it's a really good one for us because the hand held part that the caregivers keep when they may leave Ryan alone for a while has a video component. I realized that a sound monitor alone may not pick up the sounds of a seizure. I don't know if there is enough noise to notice. But they can actually look at Ryan and I've told them that I don't have a problem with them leaving Ryan alone as long as they can look at him often and make sure he's watching tv or resting peacefully. I've observed that they do carry that monitor around with them and have it where they can look at it frequently. I'm much more relaxed now.

We had Ryan on two seizure meds for a long time. One covered him immediately giving him good protection from seizures but we learned from weaning him off of it before that it also squashed some cognitive abilities that he retrieved when we weaned him off of it. He did well on lamictal alone for quite a while which didn't have such a sedative effect and still kept seizures at bay. The problem with lamictal is that you can't go directly onto a therapeutic dose. You have to start low and build up. So he was on a large dose of Keppra from the hospital on until we were able to get Ryan on a therapeutic does of Lamictal. At that point, months later, we were able to wean him off the Keppra.

So good things are happening with Ryan right now cognitively and it could have to do with the fact that the Keppra fog has once again been lifted. Unfortunately, his walking slipped back significantly after the seizures and aside from one really good day, he hasn't gotten it back up to where he was in early February. He had really gotten stronger, was standing taller for longer periods of time ad his walking was looking more normal (still assited by two men on either side of him). His legs have been weaker and his standing very short and with bent knees. Frustrating. That one good day was so encouraging because when Ryan can do something, even once, I've learned that with patience we will see it happen again. There's absolutely know reason to think that if it's possible to do one day, things won't all align again so that he can have another good day, then another and another.

But recently, all the therapists that work with Ryan have been giving me great feedback. Something good is going on. I can only explain with examples. I see it to in my interaction with him. These are things that are noticeable to people who live with him or work with him often. I hope you'll understand by a few antecdotes that these are different.

For instance, yesterday Mike was fixing our TV which was not operating right. He spent about 10 minutes until it was finally working again (there are so many inputs and boxes and remotes, you know how you can mess it all with one slip of the finger on the remote). Mike was being silly and repeating "Mikey fixed it!" He was gloating a little and Ryan was paying attention and said "I love you Mike but you're being a little pompous right now." I know I've written for years how Ryan initiates speech and comes out with some great stuff so maybe it doesn't sound new, but there is something in the way he is listening to what is going on and engaging and then using a word you may not expect to hear and use it correctly. It was said in fun and not seriously. It was just Ryan playing with Mike.

Another example was the other morning I laid next to him on his bed and asked him to read to me. Mike had selected a bood for Ryan to give me for Mother's Day. It was a perfect gift from Ryan because it was a funny children's book called "Walter the Farting Dog" and it came with a small stuffed dog that provided sound effects if you desired when reading the book. Ryan laughs hard and reliably anytime that subject is brought up so I knew it would be fun to get into the book with him. It was a level I thought he could read so I wanted him to read it to me instead of the other way around. I can't remember the last time I practiced with Ryan on his reading. He's always been able to read just about any word if it's in big enough print and not surrounded by too many other words on the page. Tracking the words has been his challenge along with getting tired and losing focus. The difference between how he read to me before and this time was great. On a page with only a couple of lines I didn't have to direct his eyes with my finger. He read at a normal pace and didn't need my help. When we got to a page with a lot more writing I would have had to really follow each word with my finger to keep him from losing his place. This time I barely had to do that. I just held my finger at the beginning of the line he was to read and he could take it from there. And he lasted the whole book, longer than any book I think I have challenged him with in all these years. I couldn't get over it. I don't think it's that easy for him all the time. This was in the morning and he was fresh, relaxed and with me. But this was a whole new level.

Yesterday he had another leisure start to the day and I went in to see him in bed, dressed already but waiting to gotten up to start therapy. He had the TV on and I asked if the show was what he wanted. (His caregiver was getting Nana up so Ryan was waiting his turn). I gave him the remote control and told him to put on what he wanted. This has always been frustrating to me because he knows how to change the channel but often just pushes the button and doesn't land on anything on purpose. He'll push and push and I can tell if he's going to select a show it will have to be me pushing the channel button so the show has a chance to appear and give him enough time to decide if it's of interest. Well this time he hit the button, paused, saw was it was and moved on. At one point he was moving through the Spanish stations and he suddenly said "My love, come down here". There was a woman on the screen with a few people standing behind her and she was looking up at a building and calling to someone inside. I looked at Ryan curious and he said "That what she just said". He had interpreted her Spanish for me. Then he moved on. Then he started to look at me as he paused on a channel and asked me if I wanted to watch that show. I said no and he moved to the next and asked me again. His restraint to not keep hitting the channel button was again something I had never seen; and sweet that he wanted to know what I wanted to watch.

These are three examples amoung so many moments I could share. He's getting cranial sacral therapy every week now and I think this may be helping him but also just weaning him off the keppra may explain some of this great cognitive improvement. But these improvements bring him further than he was before the seizures. The Keppra may have taken him backwards but getting off it should have brought him back to where he was at the time of the seizure activity. Since he is beyond that point, I think it must be that he is still healing and there could be numerous reasons why and could be simply God's timing. All I know for sure is that it's wonderful and I'm so grateful.