Sunday, March 10, 2013

Roller Coaster

Well, alot has happened since my last post.  We've had another appointment with the neurologist, Dr. Q as well as one with the developmental pediatrician, Dr. Schultz.  We were so excited that Levi's EEG in October showed less potential for seizures and that his language was increasing.  But, unfortunately, the most recent appointments have stifled our excitement.  Levi had another EEG a few weeks ago and this time it showed potential for full blown tonic-clonic (grand mal) seizures (which it hasn't shown in the past).  It also showed that the slowing on his brain has returned.  Dr. Q was concerned about this.  He said that instead of waiting six months till his next EEG, like we had anticipated, he'll need another one in two to three months.  He also said that if it still shows slowing on Levi's brain, he'll need to have another MRI to make sure they didn't miss any problems on the original MRI.  Boo.
A couple of weeks later we had his developmental appointment.  Like I said before, Levi had grown so much in language that I was certain Dr. Schultz would excuse any previous thoughts of autism.  Unfortunately, his improvement in language didn't carry over into his communication skills.  In other words, he has more words than he used to, but he's not able to use those words to consistently communicate thoughts or even his basic needs.  Soooooooooo, this past week we made the trek back to Rochester for the third time in a month for the official autism screening.  We have to go back this Friday to discuss the results with Dr. Schultz.  I'll keep you posted.

On another note, we spent an evening in the ER this week because Levi was having seizures due to a high fever.  It's the first time he's had any seizures since his initial hospitalization.  The really bad part is that it was the spasm seizures.  I mentioned, in my last post, that if Levi continued to be seizure free, especially spasm free, Dr. Q might be willing to switch to a milder medication.  And, at his appointment a few weeks ago, that was confirmed.  But because of his seizures this week, now, instead of switching to a milder medication, we have to increase a medication that could be making his developmental issues worse.  Again, Boo.

This was a very technical post, not well written, but it's helping me process all the ups and downs of this roller coaster ride.  I'm trying to find that balance between hope for miraculous healing and faith that God might want to use this challenge to form our family into what He wants.  So, for now, I'm just processing....

The one thing that I don't have to process, though, is that God gave me this beautiful boy just the way he is - joyful, playful, silly, and oh so affectionate!  Levi is going to be who God made him to be and nothing can get in the way of that.  Nothing can.  No label, no diagnosis, no prognosis is going to change who he is.  And, I'm hanging on to that truth with every fiber of my being.

1 comment:

  1. Praying for all of you, especially sweet Levi.