Thursday, January 24, 2013


So, in my last post I mentioned that exciting things are happening in regards to Levi's development.  Over Christmas break he started doing and saying things he has never done or said before! He started mimicking words regularly (something he did very infrequently before).  He started making animal sounds at the appropriate animals without being prompted to do so (he would rarely do it when he was prompted and only for a couple of animals).  Now he knows several animal sounds!  He started pretending to eat toy food and talk on phones.  This is a huge step as he had never pretended before.  He has also starting bringing us toys and books to play and read with him.  Again, this is something he's never really done.  These things might seem simple to most people, but they are things he should have been doing six to twelve months ago.  So, to see growth like this so quickly is very encouraging!  We are quite encouraged by this development and are hoping to see him continue at this rate.

The main thing to keep praying for is that he is still inconsistent in all of this.  This could be caused by his yucky seizure meds, but the developmental specialist said it could also be a sign of autism.  She said he is not on the autism spectrum at this point, but that if he continues to be inconsistent in his attention and his performance that we may have to reevaluate.  Before we do that, though, she wants to try to get him off of his current seizure medication and onto something that doesn't cause developmental problems like this one does.  The ONLY reason he's on it, at this point, is because his seizures were doing more damage than the medicine could do and the regular seizure meds weren't stopping the seizures.  But, since they've been stopped for awhile, we'll be talking with Dr. Q about when we can make some changes.  He's the ultimate deciding factor for that. But, once we do change his meds we'll be able to tell what is causing his inconsistency.  Please pray that it's the medication and that we can switch to something new soon!!

We have another appointment with Dr Q as well as another EEG in a couple of weeks so I'll have more to share soon.

Monday, January 14, 2013

Catching UP

WOW!! It's been two months since my last blog post!  I've got some serious catching up to do.  So, I'm going to cut to the chase.

November, as you may have noticed by the hideous redecoration of my blog site, was National Epilepsy Awareness Month.  I successfully posted about epilepsy two or three times and then got sucked in to the craziness of the holidays.  Making homemade stockings and hand warmers for my entire family ended up taking my every spare moment.

I also spent A LOT of time in the doctor's office waiting room - twice a week for four out of six weeks (all of Nov and the first two weeks of Dec), and once a week the other two of those six weeks.  It was a little crazy.  But, things are slowing down now so I've been able to have some chill time over the past week or so.

On to the Levi front.   Of course a goodly portion of waiting room time was for him, but I'm happy to say that his appointments are going to be spreading out a bit.  Hooray!  I will, though, share the results with you because that's what I do here :)

The big appointment that we had with Levi was toward the end of November.  We met with a developmental pediatrician who, you guessed it, assessed his development.  She asked me a million and two questions and observed him while he played and played with him and talked to him, etc.... etc.... etc....  In the end, she said what I already knew.  At 23 months old he was assessed at a fourteen to sixteen month level for play and physical coordination, but at a twelve to thirteen month level for language.  Like I said, this wasn't a huge surprise to me considering my previous post about Jack.  It was disappointing, though, to hear it as an official assessment.

Do you remember that one time in one of my previous posts that I cracked that one funny joke about how if Levi is six months behind now then when he's thirty people aren't going to get on to him for acting like he's twenty-nine and a half so I have nothing to worry about?  Well....., apparently that's not quite how it works.  Instead of months behind, it's percentage behind.  So, according to the doctor, he's behind by about thirty percent.  So, if he's behind by thirty percent at the age of thirty,.... well..... you can do the math.  So, that was disappointing as well.  But, she did say that children who start out on track, like Levi did, and then have some kind of event or medical situation that causes the developmental delay, like Levi did, have a better chance of gaining ground back.  She just didn't want to get my hopes up, because it is also likely for someone in his situation to remain delayed.

So, I was rather disappointed and have really struggled with it, especially for the first few weeks.   It's not easy to realize that your vision for your life, and your child's life, might not be even close to what you expected and dreamed.  So, I've had to let go of some dreams and ideals that I never thought I'd have to let go of.  It's been hard, but, amazingly, it's been liberating.  I'm reminded, again, of God's sovereignty.  I'm not in control of anything and the reality is that no matter how well life goes, things aren't going to go quite how I expect them to.  And, the more I can let go of my dreams and just let God have His way, the more I'll be able to handle it and even embrace it and be content and happy when things don't go my way.  I'm not saying I'm giving up hope for a complete recovery.  On the contrary, I know Levi will have a complete recovery.  I just don't know exactly what that will look like.  And I'm becoming more and more okay with that every day.

Now, since Levi had that last appointment there have been some pretty exciting developments in his development (ha.  developments in his development. I'm funny.) But, that's for another post.  This one's getting too long.

To Be Continued..........