Many of you have asked for an update on my son.
It has now been two weeks since Charlie’s brain surgery, and he will likely remain in the hospital for several more weeks of intensive physical, occupational, and speech therapy. The surgery essentially disconnected the right hemisphere of his brain so Charlie has very little movement on his left side. He will have to re-learn how to walk and use his left arm. The term baby steps is all too accurate.
Unfortunately, one of the permanent side effects of the surgery is loss of movement in the fingers on his left hand. I doubt he will ever be a concert pianist. Then again, if he inherited his dad’s musical skills, he wouldn’t have been one anyway.
This has been an exhausting and emotional journey, to say the least. For every two steps forward, we take one step back. After three days without seizure activity (which hadn’t happened since March of 2012), Charlie began to have seizures again. The bright side: they only occur when he sleeps. We, of course, had hoped he would be completely seizure free…but if the small episodes come only during slumber, that’s a trade-off we’re willing to accept.
We continue to be encouraged by the tremendous outpouring of love, prayers, and thoughtful messages. They have lifted us when we are at our lowest point. We know God is in control, and we cling to Him for strength. A friend of mine commented that, because of Charlie, she had done more praying in the last few weeks than she had in a long, long time. Another silver lining…
Charlie is beginning to make strides. When the seizures began over two years ago, it pushed the pause button on his developmental growth. His speech and cognitive skills are still stuck in 2012. But we’re beginning to see glimmers of growth and there’s nowhere to go but up. I’m looking forward to someday soon having a real conversation with my son.
Charlie celebrated his fourth birthday yesterday…but I like to think of it as his second first birthday. Hopefully he won’t remember much from the last three years. I’m trying to forget, too.
Here’s a little video of Charlie’s first fourteen days in the hospital. Tim suggested I post a warning that it might make you “ugly cry.” But I won’t.
I hope you watch it and smile.
**UPDATE – 6/14/14**
Charlie is still in the hospital for neurorehabilitation. His seizure activity is down due in part to the new medication, which we continue to adjust as needed. Only two small sleeping seizures in the last two days. Pre-surgery, he was averaging up to 12 seizures a day.
Charlie continues to grow stronger. The therapists are encouraged by his progress, especially in speech. For the last two years, Charlie wouldn’t even say his name. Now he does. He couldn’t string together two or three word sentences. Now he can. This disease was robbing us of our little man. Now we’re finally getting him back.