Friday, June 22, 2012

Neurology Visit

I know some of you are waiting to hear how the neurology appointment went, and I would have posted sooner but we have been very busy.  On the way home from Cardinal Glennon we were cruising happily along 255 and all of a sudden lost the transmission.  Thankfully we were close to home and able to easily have the car towed while Mom came to pick up Levi and me.  So Patrick had to take off work while we frantically shopped for a new car.  We got a great deal on a nice Dodge Caravan.  I think the last time I owned a van Tommy was Levi's age (17 years ago!)!! 

So on to the neuro appointment:  It was an emotional roller coaster of happy and sad.  Our favorite neurologist, Dr. Chrusciel, is leaving next month and this was our last time seeing her.  She has been with Levi since the beginning when he was in the ICU, and it will definitely be hard to lose her, but it's a wonderful opportunity for her family and we are excited for her!  We were so glad that she was able to see Levi so active and happy.  We spoke about the daily seizures and she said she'd like for us to stop counting seizures.  At first this felt like utter chaos to me.  I've been counting seizures almost every day for the last year.  How will I know what's going on if I don't keep a log?  What on earth will I do with myself if I'm not watching him every moment of every day?  It didn't take long for the initial shock to ease into a feeling of euphoria.  No more seizure counting!!  No more overanalyzing at the end of the day!!  What a relief!  I have to say, it's been wonderful!  When I came home, I picked up the seizure log and stuffed it in a drawer, out of sight, and definitely out of mind. 

So everything looks great.  Both doctors were thrilled to see that Levi has gained nearly two pounds in the last six weeks since he started the ketogenic diet.  He has always been below the growth curve and now, for the first time ever, he is ON the curve!  Go Levi!  He really showed off, it was so cute.  He was holding his head, kicking his legs, and grinning from ear to ear.  He actually learned how to raise his shoulders (from a reclining position) and sit up just that morning, and he was practicing it over and over!  This is something that he used to try to do to no avail, and then completely lost even the desire to try.  Now he not only is trying again, but succeeding!  What a blessing! 

I thought we would be tweaking the diet, but Dr. Arun wants to hold steady and give it time.  I have no issues with that.  As long as he keeps progressing at this rate I'm a happy camper.  The seizure control will come.  Sometimes it just takes a while.  As far as medication goes, we are weaning off everything but Phenobarbital.  We have already begun the Lamictal wean, which will be followed by Keppra and then Clobazam.  This is exciting in and of itself.  The less meds he's on, the more he will gain in alertness and progression.  It will take a while, but by Christmas he will be on only Phenobarb and Nexium. 

When we think of how far Levi has come from that five pound little peanut hooked up to life support and trees of IV medications, we are just so thankful.  God has healed Levi, and he is finally beginning to show all signs of moving toward the milestones he has missed.  This is a wonderful place to be, and we are looking forward with great anticipation to the future.  Thank you all for your continued prayer!

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