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Thursday, August 6, 2015

Neurology Visit

We had an appointment with Levi's neurologist, who specializes in epilepsy, yesterday.  Several new plans are in play, and we are asking for prayer that everything goes well and Levi continues to improve.

Right now, he is having only a handful of quick seizures a day.  We weaned off the ketogenic diet, which controlled the seizures, and he is not on any anti-epileptic medications (except Neurontin, which he actually takes for neuropathic pain).  This is SO exciting!

Levi is happy, doing well at school and at home, and is continuing to learn new things.  He is working on crawling, and has been able to scoot a short distance across the floor!  He has become and expert at moving in circles :).

The first change we are making is to wean off Poly Cytra K.  This is a medication he was taking due to the likeliness of the ketogenic diet causing acidosis.  He shouldn't need this anymore, and I don't anticipate any problems, but please pray that it goes smoothly.

Second, we are going to try to wean off Reglan.  Levi takes this medicine four times a day with meals.  It helps the stomach empty contents quickly, as Levi had issues with delayed emptying.  He's been on Reglan the past two years, and it was a great help, but it can have some harsh side effects, so we are going to try to discontinue it.  I'm nervous about this one, but even if we could eliminate half his doses, that's less medicine in his system.  The delayed gastric emptying was more than likely caused by the huge amount of fat in the diet, and since he is not taking that much fat anymore, the wean should theoretically go very well.  Please pray for this, and specifically that he doesn't have issues throwing up!

Third, the doctor is looking into beginning the process for starting marijuana oil.  This has made great strides for some children with severe epilepsy, Although we are happy with his seizure control at this point, if he could become seizure free that would be even better!  Marijuana oil is derived from the plant, but has almost no THC, the compound that causes a high.  We would simply put a couple drops of oil on his food.  I'm excited to see where this takes us!!

We are enjoying our new wheelchair van, thanks to all the many people who came together to help raise funds to offset the cost!  I could never thank each one of you individually, but please know that we appreciate every donation, every prayer, and every kind thought sent Levi's way.

The van has made our lives easier, and has made a huge impact on Levi!  There's no pulling and tugging on his body each time he goes in and out of the car.  This is huge for him!  This winter he will be very happy to leave a warm building and roll into his van, still tucked into his warm covers, instead of being lifted out of a warm chair into a freezing cold car.

Please pray for Levi to continue to grow and learn and be happy.  Those big smiles are so wonderful to see!

Working on crawling


Smiling at Daddy




School Field Trip, fun with Moga



Fun with Miss Robin