The Smith family are champs at the waiting game. God has decided to teach us some important lessons about the value to be found in waiting. I always know that if I order something online, it will arrive on the last possible date. When we moved a year ago, our moving truck came on day 11, which was the last day they could come without giving us a full refund. Test results always seem to take longer than they should and Jake and I have gotten great at playing games at stop lights and in longer than normal check out lines.
When we got the epilepsy diagnosis, our neurologist told us that the average time to seizure free status, which is the goal of the medication, is anywhere from 2-6 months and people usually go through more than one medication before the right balance is achieved.
You can imagine my surprise when, at our last appointment, Jake’s neurologist said, “Well, I’m as surprised as you are, but we are going to consider Jake seizure free.” I had to ask her to repeat herself a few times, but she kept saying the same thing.
Thirty days and one medication to seizure free status is very rare. We will do another MRI in March to confirm that his brain has calmed down. I just can’t wait to stay up all night with him again!
Since the seizures have stopped, school has also gotten so much better for him and therefore, for me. He has a full-time aide, who is wonderful and who Jake believes is his girlfriend. She is there to monitor him and to help him get started on his work and to give him hugs during math. I wonder if my math experience would have been better if I had some hugs during math! At the end of every day, I get a chart of his day and notes if he had a hard time. He has had 10 green days (with no warnings or time outs) in a row and we are pretty stinking excited about that! He has also gone from the middle of the class academically to close to the top of the class. He is testing better, his comprehension is way up, and since his brain isn’t shutting down every few minutes, he is able to focus and track with his teacher.
As an aside to parents: If you think something is not right with your kid and what everyone else is saying is wrong with your kid doesn’t sound right, pay attention to that little voice. Keep pushing to find out what your gut is telling you! I was told many times that Jake had ADHD and an anxiety disorder and it just didn’t feel right.
His behavior, attitude, and smart little mouth have all returned to the Jake that I had before we left Colorado. Last week, his gymnastics coach came up to me with a big grin and told me, in great detail, how great Jake was during class. I told him, “That is the Jake that I know and love and I am so happy that everyone else gets to see him now!”
We still have our struggles with a stinky Kindergarten attitude and a strong desire to eat nothing but graham crackers, but life has gotten so much easier and smoother over the last couple of months.
I don’t know why we got the “get out of jail” free card on this one. We don’t usually and although I am a firm believer in God answering prayers, I have come to understand that He tends to answer prayer in ways that fit His plan and are for our eternal good, not our short-sighted good. And, “good” doesn’t always mean what we think it means.
Don’t misunderstand me that our journey is done. We are two years out from even considering weaning Jake off the meds to see what happens. In the meantime, we have monthly blood tests, EEGs three times a year, and constant monitoring. I’m not happy with a few things I’ve seen lately, but I don’t know if Jake was spacey and exhibited some seizure like behavior because he was spacing out and tired and getting sick, or if there is something more that we need to deal with. We still have a long road to walk, but we are already over a lot of the bumpy parts.
I am grateful that I have the cutest and funniest little guy walking with me on my long road. My parents sent Jake a doctor outfit for Christmas since he wants to be a doctor when he grows up and here are a few pictures at his last neuro appointment.
Since he is so skinny, he is proportioned like a grown up, which makes his stride into the hospital even funnier:
He is doing really well at reading now, so he is actually reading some of the parts of human anatomy!
I’ve taken to letting him dress up as a doctor whenever we have to go visit a doctor’s office. People are rarely there for a good thing and I hear the wave of laughter and funny comments that come after people see him dressed like this. Everyone needs a laugh and if we can make someone smile in the midst of our own trial, I’m happy!