It feels so odd sitting here at the computer writing again. Life has been a blur since June of last year. There is so much I want to write, but I haven’t been able to find the words, or the time to look for them. So writing has become a thing to do again someday.
But last week I was talking with my sister about Little C and she asked if I would be willing to write an update for everyone. I’m glad she asked me. I miss the feel of the keyboard under my fingertips.
For the last three years, Little C has been living with LGS. You can read more about what that means here.
Medicine has been unable to control his daily multiple seizures, and the types of seizures keep evolving.
One of the things Little C struggles with is balance. He falls a lot. He bumps into walls and just about any other stationary object. After two trips to the ER to repair a split ear, Liz and Charles decided to get Little C a helmet to protect his head from the many bumps caused by his lack of coordination.
About two weeks after he got his helmet, just after Thanksgiving last year, Little C began having drop seizures.
We experienced the reality of those seizures when Liz’s family came for Christmas. Watching Little C drop to the floor, frozen as his body tenses broke my heart.
My heart breaks.
For my nephew, for my sister, for my brother in law.
You can’t imagine the constant care Little C requires at this point in his journey. It’s an exhausting, never stop vigil. Throw in a rowdy three-year-old brother and you can only imagine the daily challenges they all face.
When Liz and Charles returned home from Christmas, Little C was having around 8, minute-long drop seizures each day. The neurologist didn’t like what he was seeing, so he scheduled another few days in the hospital for more tests.
Liz was at the hospital with Little C for 5 long days. This was their longest time in the hospital so far, but this time, the multiple tests found something new.
One of Little C’s scans of his brain revealed a small malformation on his left frontal lobe.
Little C’s seizures are generalized, which means they originate from all over the brain, but even in cases like his, the Dr. believes that by removing that malformation there is a good chance it could stop his seizures.
So on May 12th Little C will undergo brain surgery to remove the malformation in hopes that the seizures will indeed stop. And if not stop completely, we hope they will decrease significantly and give him a chance to regain some of the development the seizures have delayed.
As you can imagine we are all filled with mixed emotions. Hopeful that the malformation could be the underlying problem…a problem that’s treatable. Fearful for the risks and side effects of such a surgery.
We will all know more details about the surgery once Liz and Charles meet with the doctors this Friday on April 15th.
Please pray with us that the surgeons will be able to remove the malformation completely, that there will be minimal pain, that Little C will recover quickly without further complications.
But most of all pray for strength for Liz and Charles as they place their precious son into the hands of the surgeons.
We are hopeful that life for Little C will get better. But we fear the unknown.
We are so grateful that we know the One who holds the future.
We know it’s in His hands we place Little C. But knowing doesn’t always make the journey easier.
Thanks for praying with us.
I’ll keep you posted.
And for those of you who are wondering how life is going here, and what happened to make it such a blur since last June, I’m working on an update for our family too. It’s just harder to write about us right now than it is someone else. I’ll get there. Hopefully soon!!!