Friday, July 11, 2014

2 Years!

This weekend marks two years since Levi got out of the hospital with his sudden onset of seizures.  In fact, today is the North Mankato Fun Days, which is exactly where we were when he had his second cluster of seizures that confirmed to us that something was, in fact, wrong.  We ended that day with the beginning of a week long stay in Mayo Clinic in Rochester.

His prognosis has been up and down since that point.  If you've followed along, you know the story.  If you haven't, here's a brief synopsis - his prognosis has been up and down since that point. :) Yes, I'm being that brief, because I want to share our most recent situation.

In March of this year, Levi had a burst of language that, I believe, more than doubled his vocabulary.  He was speaking in four and five word sentences all the time and even more complex sentences on occasion. Toward the beginning of May, we started to feel like he was maybe using fewer words than he had been. We, and his speech therapist thought maybe he was just having a bad week.  Within less than three weeks he had lost so much language that his speech therapist told us to call his doctor right away.  So, naturally, we called his doctor right away.

Dr Q (our pediatric neurologist) wanted Levi to come in for a 24 hour EEG as soon as possible.  His concern - a type of seizure that happens during sleep and causes loss of language.  So, the next day, we headed over to Mayo for a couple of nights.  They didn't see what they were looking for so we decided to take the next step, an MRI, to see if there were any physical abnormalities in Levi's brain.

It took a few weeks to get in for the appointment.  So, on June 30, we trekked back over to Mayo for an early morning MRI.  They didn't see any physical abnormalities, which is good, but they did note that the coating on the nerves in his brain was not forming fast enough.  This had us worried for a couple of days, but after consultations with several neurologists, it was decided that the delay in the coating was so minimal that it couldn't possibly be causing any problems.  In fact, they seem to think the development of the nerve coating will catch up.  So, we still had no answers as to WHY Levi has lost his language.  This led Dr Q to recommend genetic studies and he sent us to the Developmental Pediatrician, Dr T.

This leads us to yesterday's appointment with Dr T.  At this point, Levi has now lost at least 75%-80% of his language, probably more, but I'm trying to be upbeat.  He doesn't SAY much of anything.  He can point to things if you ask him where it is, but he can't say the words.  (Please don't ask if he's just being stubborn.  NO. He is not.)  He actually tries to say the words, but it all comes out in jibberish, like a stroke victim.  No he hasn't had a stroke, but his speech therapist and Dr T feel that it is possible that he could be having seizures or some kind of abnormal activity in the same part of his brain that would cause a stroke victim to do this.

So, yesterday's appointment with Dr T went something like this: I fill out the usual developmental survey.  Dr T looks at the results.  Dr T is very concerned about the results.  Dr T actually leaves to get a neurologist in the room with us to help with a game plan.  Dr T returns, unsuccessful.  Dr T gets a nurse and barks out a list of orders to have her MAKE SURE we follow up with other doctors.  Nurse says there's a six month wait list to see said other doctors. Dr T says to request that Levi be placed on the top of the waiting list as this is an urgent matter.

These other doctors will require much more testing.  We're actually trying to get bumped ahead with some of our other appointments and testing as well.  But, we're looking at the next months being full of trips to Mayo Clinic for lots more tests to find resolution for this loss of language.

At first, I was discouraged about the urgency of these tests.  Both Dr Q and Dr T are adamant that we get Levi in for these tests as soon as possible so we don't risk his losing other skills.  This is scary to me.  But, my (nurse) sister put it this way - if Levi's doctors think it's urgent, it's because they think they can do something about it.  If there wasn't any way to help him, they wouldn't be pushing so hard to get him tested right away.  This is encouraging to me.

In the end, we're trusting that God has the perfect plan for my son.  Though, he has very little language at three and a half years old, he is happy.  He gets to see the world from a perspective that NO ONE ELSE will ever get to see it.  He is beautifully and wonderfully made and I thank God for that.

Here is a song I wrote for my sweet boy while we stayed in the hospital for his EEG last month.

And a picture on the ferris wheel today.  Thank you North Mankato Fun Days for offering free rides and food to our special needs community.  It made for a happy day for so many!!