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.
(Click me if you can’t see the embedded video below.)
**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.
Oof.
I’ve been following your journey and just want to say how strong and wonderful I think your family is! The pictures of Charlie hugging your wife’s neck…MELT!! You can tell what an amazing little guy he is and what a wonderful mother she is! I will continue to pray for you all. Thanks for all the updates…I know that the whole town of Carterville is praying for your sweet son!
I totally just “ugly cried.” And still am. So much love surrounds your son you can feel it just watching the still images . Thinking of you so much.
Ryan, I really didn’t come into work today expecting to shed tears. It is truly inspiring to watch how positive your entire support network is through this process. Charlie is a lucky boy to have such a amazing family! Thank you for sharing your story.
Charlie hugging mom got me. Thanks for the update. It’s amazing to see his progress and I’m so glad most of the seizures are gone. I haven’t had the chance to meet your family in person, but I’m honored to be able to follow your journey.
I’ve been keeping up with Charlie’s journey and it is so touching. I had a younger brother that had epilepsy and died at the young age of 13 yrs old, he had terrible Grand Mall seizures and died from a seizure. He was such a great kid, I wish they had know more about epilepsy then.
As I was reading your story it brought back so many memories of my little brother “Patrick”. Thanks for sharing , Clay and I have been praying for Charlie and your family.
The ugly cry was fair warning, but I felt it was more of a happy cry. God bless each of you.
What a perfect song to accompany a perfectly orchestrated journey to right now. Thank you for sharing that glimpse into the past weeks. Will continue to pray and praise God for Charlie!
The video is such an inspiration because it show all the love and all the faith that all of you have. The journey is hard, but I believe Charlie will continue to be an inspiration to all of us in the years to come. Stay strong and don’t lose hope.
It never stops amazing me of the wonderful people God has placed in my life. Ryan you and your family are the perfect examples of the cornerstone of Faith Hope and Love. God Bless you all… still lifting you all up daily. Your old friend. Brenda Lawler.
This is priceless I started off crying and still crying, I have to say I do believe in Miracles and having FAITH IN GOD anything is possible, you all are wobderful, strobg, and positive parents, I will share this touching story, I will keep u all in my prayers
I am from Goreville, illinois I just got home from Cardinal Glennon Children’s Hospital visiting my friend and her son, her son is Casey Skelcher he was in a car accident last Friday he is in need of lots of prayer they thought he had just a fractured neck but it was much more serious than that and then his arm was hanging out the window his older brother was driving and blacked out they rolled 4 times so he is having surgery again tomorrow on his arm ge has major road rage tore off of his arm, he is in a body brace from waste up a neck brace, he has one heck of a mom who is off work w OUT pay but I told her God will manage to get her bills paid your babies come first in anything, please keep Casey and his Mom Marci my great FRIEND, IN YOUR PRAYERS!♡♡♡♡♡