Wednesday, October 10, 2012

The "A" Word

So, we had Levi's latest check up this past Friday.  Overall, it went very well.  He got to wear a hat with the electrodes for the EEG instead of having thirty-two electrodes individually super glued to his head and then individually scrubbed off leaving bits of glue and removing bits of scalp.  That was nice.  The wait was much shorter this time.  The EEG was at 7:30am and the checkup with the doctor at 12:45pm instead of 4:30pm.  Also nice.  We got home in time for dinner.  Very nice on the wallet.  The four lane highway, on the way there, that has been under construction for almost ten years, was finished, cutting about twenty minutes off the drive.  Very nice.  Like I said, overall, it went very well.

The appointment itself was pretty normal.  Dr. Q took well over an hour with us, which I greatly appreciate. Nothing worse than driving and waiting for seven hours to spend ten minutes with the doctor.  Not only did he give us lots of time, but he also remembered specifics about Levi and his case that I would never remember, especially if I were a neurology resident working thirty hour shifts (which he does do).  When I commented on that, he said, "Of course I remember. Levi is is special."  Have I mentioned that I LOVE Dr. Q?  Well, I LOVE him.  He makes me feel like Levi is not just an interesting case study, but an actual patient - a valuable patient.  I like that.  I want to hug him for that.  Would that be awkward?  

So, anyway, the appointment went well.  We reviewed Levi's EEG.  Where it previously showed activity that could cause seizures on both sides of his brain before, this time it showed the seizure potential was only on the left side.  Dr. Q didn't want me to be too excited about it because apparently the right side could have just been taking the day off of producing potential seizure activity - my words, not Dr. Q's.  His words - "I'm not quite sure what to think of it."  Okay.  I'll just believe that God is healing my baby.  But, I'm not going to freak out if next time it shows activity on both sides again.

As well as discussing the EEG, we also discussed medication.  We had to increase his meds which kills me a little bit.  But, Dr Q says that he's already being risky by giving Levi very lowest doses possible so even the slightest weight gain requires more meds.  So, I guess I understand that.  I prefer meds to more brain damaging seizures, or seizures of any kind for that matter.

The last thing we talked about was the "A" word - autism.  This was the hard part of the appointment.  As with any case of spasm type seizures, Levi is being constantly observed for traits that fall in the autism spectrum.  There are three of them - language delay, repetitive movements, and social delay.  According to Dr Q, Levi has two of the three - language delay and some possible repetitive movements.  He is recommending that we increase his therapies, especially speech, so we can be on top of it, rather than just treat it.  Mama doesn't like to hear this.  I'm happy to know he is actually quite high on the social scale, which is usually the hardest thing to deal with in cases of autism, but it's still not a nice conversation to have about my son.

To clarify - he has NOT been diagnosed with autism.  At this point, he only has two of the three traits and one of those, repetitive movement, is unclear.  He has to have all three, I believe, to be diagnosed.  But, that he doesn't have all three traits, apparently doesn't mean he won't develop social issues later.  So, we have to watch very closely.  I don't like it.  Just thinking of the possibility of my baby having autism is devastating.  It could make that suddenly steeper hill even steeper and higher, like forever higher, as in life-long struggle higher.  As in, everything I thought about how my life would be has just changed higher.  You never realize how many expectations you have for life until you realize they may not happen.

Now, the good news is that even if the "A" word is an issue, we'd be starting interventions very early which would give him a high chance of living a pretty normal life.  So, I'm not freaking out.... too much.  But, I will be honest, I feel like I'm going through a grieving process.  Either way, my life has changed, and forever, for the bad and the good.  It will never be the same.  Ever.  But, do you know what will be the same? Or maybe I should say WHO will be the same.  My Father God.  He is the same yesterday, today and forever!  He doesn't change!  He is good!  He has a plan!  He is Abba - Daddy God.  Forever.  Period.

With that, I'm going to leave you with the words to the chorus of a song that has carried me through this week:
Afterall, You are constant.  Afterall, You are only good.  Afterall, You are Sovereign.  Not for a moment, will you forsake me.

I'm so glad I can trust in Him!

1 comment:

  1. You know I don't talk about Carlie a lot but I think about her more than I ever say. I remember holding her in my arms at the hospital and grieving of all the things I wanted for her life and realizing none of them would ever come except the most important that was before she knew her daddy she knew Jesus personally. I am firm in this thought pattern and firmly believe that no matter how high the hill becomes or what challenges await you that the greatest of all things is this... you will have Jesus in our home and Levi will know him from an early age. Everything else is wonderful but not as important, the cars, the houses, the jobs, ect ect ect. I don't believe this is the final state of things either. When I was growing up I was giving the title of asthma and ADHD but I am not really defined by either one today because somewhere along the way Jesus worked a couple of miracles. now we are standing with you in prayer also that this hill will become nothing more than a bump but even if it is a hill know that there are other people around that want to climb with you.