So......you can imagine our disappointment this week when Luke's neurologist called to tell us Monday's EEG shows that Luke is at a high risk for seizures. The news hit hard. To tell you the truth, I haven't thought much about seizures for a very long time. We have a bottle of little white pills on our kitchen counter that say on the label,"In case of seizure, crush half pill and administer to child", but I really never thought we'd use them. In that past, Luke has had a seizure when he was A) critically ill or B) in the process of getting on or off a ventilator. We haven't seen any signs of seizure activity since we've had him home. The doctors have seemed fairly confident that Luke would outgrow whatever phase this was and would go on to lead a seizure-free life. And while he's been on anti-seizure meds for months now, it's been the same dosage. This means, that as he is growing (and, thank God, he's grown A LOT!), he hasn't required any more meds. So, all of this led me to believe, that even though we give Luke anti-seizure meds in his bottle twice a day, he really doesn't need it, and come July 13th when he had his EEG, the test would show that everything was normal and we could start weaning him off these meds.
Well, that's not the case. I really don't know many other details right now, except those words the doctor said over the phone..."It's way to risky to take Luke off his meds. He is at a high risk for seizures." He continued on with some generalized statements about the pictures of Luke's brain waves on the EEG and seemed, well, not so pleased I don't think with what he saw overall. Although the doctor didn't want to see us until October, I called and requested (perhaps insisted) that we go in as soon as possible. So, we will visit the neurologist on Aug. 11th, ask all of our questions, and, hopefully, have some more answers then.
This is what I know.....I don't want Luke to have another seizure...ever. So, I'm praying that he doesn't. I'm praying for God to continue what we KNOW He has started in Luke...a COMPLETE HEALING of his brain....for perfect order to be restored...for damaged parts to be made knew and for his motor/language/intellectual development to continue without any complication. I'm praying also that, since I am his primary caregiver that I will act quickly if there ever is an emergency and that I give Luke the best care possible. Finally, I'm praying for God's peace to settle down deep....really deep in my heart. I have to be honest and say the doctor's words have sparked new fears......do I let him sleep all night without checking on him...can I leave him in the church nursery, what if I walk in the room to find him in the middle of a seizure, what if he seizes in the car, what exactly did the doctor see in the EEG, will Luke be normal, etc...... as a parent, you can imagine all of the thoughts that begin to race through my head. I serve a God of peace and I'm praying he settles all of these fears and helps us rest easy knowing He really IS IN CONTROL.
The reality is "they' (and I'm referring to the medical staff in general....everyone who is overseeing Luke's care) have told us many things that haven't been true. Don't get me wrong. I adore medical professionals in many ways. They are true heroes, saving lives everyday. It's just with Luke, "they" have a terrible record. Just listen to what "they" have said about Luke:
* On the morning of my delivery, "they" said Luke wouldn't live.
* On the afternoon before Luke was scheduled to have a shunt placed in his brain, "they" said there was no possible way for things to improve. It did improve (overnight!) and no shunt was placed.
* "They" said Luke may not have enough intestine left after surgery to be normal. Instead he grew back all of the intestine that was taken out.
* When Luke became critically ill after intestinal surgery, "they" said Luke wouldn't make it through the night.
* "They" said it would take months for Luke's digestive system to get back to normal and that he would have diaper rash for two years. He has no rash.
* "They" said Luke would most likely struggle to learn to suck and eat from a bottle and that he may go on to have oral aversions to solid food. Luke has been drinking bottles like a champ since he got home and is now eating full jars of baby food and crackers.
* "They" said Luke's right optical nerve was 60% the size of what it should be and would not grow to normal size. At last check, both eyes have normal-sized nerves.
Do I go on? There's more....but I think you get the point. I think their predictions are right..in the natural sense. But God has supernatural plans!! There is no doubt!
Will you say a prayer (or two or three!) that Luke's brain will be healed completely? Pray for seizures to never be an issue and for Luke to be able to catch up developmentally to where he should be. We need miracles...that's for sure. God can do it. We get emails and cards and phone calls often, even still, with people saying God keeps reminding them of Luke. We keep praying.....and I believe God will keep answering.
Thanks for praying!!