Travis took Ryan to Omaha yesterday to see Dr Madhavan again. We haven’t seen too many changes in Ryan’s seizure patterns lately, and it’s been about two months since we started him on Onfi. He does appear to be a little more clear and focused at school now that he isn’t getting a midday dose of a benzodiazepine anymore which is a nice perk of this last med change. Now it’s time to start the Sabril. This is the drug that has been coined as a “last ditch drug” if you believe all the sites on the google search engine. Either way, it’s the last drug we have to try right now so here we go. This is also the drug that can cause peripheral vision loss which is why I have been so leery to start it for quite a while now. But like our doctor said in July, Ryan probably doesn’t use his peripheral vision anyway and will never need it to drive or play sports. Because his vision as a whole isn’t in jeopardy, I’m much more relaxed about starting him on it. Even still, this is a difficult time for me. Knowing this is the last drug the doctor has on his list of things to try really brings out a lot of emotion for me. Of course he told Travis if this doesn’t work we can always go back to trying diet changes or revisit other drugs we’ve tried in the past. But as research says, once a patient has not gained seizure control after trying at least 3-4 drugs, they are pretty much classified as being drug resistant to seizures. And we reached that point when Ryan was only a year old. Of course modern medicine is always coming up with something new, but I simply have a very hard time putting any hope in drugs being able to stop Ryan’s seizures at this point. The doctor said himself that Ryan has malignant epilepsy, and we all know there is no stopping his seizures from spreading and continuing – they’ve already spread from his frontal lobe to his occipital lobe so they are now pretty much everywhere. So instead of looking for that magic cure we will never be able to grasp, we just try to slow down the seizures that attack his brain all day long. Like I have been saying for years, Ryan is happy, loved and pain-free so what else could I possibly ask for? He is exactly as God intended him to be and he is changing the world in the way God planned. So as long as we get to love on him, we will cherish all that God gave us in our little Ryan.
This morning as I sat in my chair and listened to the leaves rustling about and enjoyed the crisp, cool fall breeze, I read from Jesus Calling by Sarah Young. And I want to share part of today’s devotional because it struck me so profoundly as I place my Ryan right back in the arms of God where I need to remember he belongs.
I have called you to walk with Me down paths of peace. I want you to blaze a trail for others who desire to live in My peaceful Presence. I have chosen you less for your strengths than for your weaknesses, which amplify your need for Me. Depend on Me more and more, and I will shower Peace on all your paths.
The LORD is my shepherd, I shall not be in want. He makes me lie down in green pastures, he leads me beside quiet waters, he restores my soul. He guides me in paths of righteousness for his name’s sake.
He’s a trustworthy God who knows exactly what I need when I need it. I’m so thankful for these times when He simply asks me to be still and let Him do what he does best – lead the way and calm my anxious heart.