A Voice for Levi

So now for the latest change in 2012 for the us. Some of you know that Levi, who is now two and three months, has been in speech therapy since turning two.  At two, he had few words, around 10-15, and didn't use them very often, so we hoped therapy would help encourage the speech process along for him.  In some ways it has gone well as he really enjoys it, tries very hard, and has repeated a few new sounds back to us. However, during this time he has not had any overall speech improvement and has actually lost any spontaneous use of words, except for the word "mama".

Levi feeling pretty awesome in his new pants.

Last Friday in one of his speech sessions, his speech therapist through the school district mentioned that she thinks he may possibly have something called Apraxia (also known as Childhood Apraxia of Speech). With Apraxia, kids know what they want to say and have a grasp on language, but their brain is unable to send the message to their mouth to form the words. They essentially cannot naturally tell their mouth how to move to form the words they want to say. It is a neurological disorder that can be genetic or, rarely in the case of children, caused from some neurological damage. After hearing this news, we met with his pediatrician and another one of Levi's speech therapists and both also had concerns regarding his speech regression and lack of progress. Because Apraxia is so rare, none of them feel comfortable enough to diagnose it or perhaps even give him the treatment he needs if it is indeed Apraxia.  We have now been directed to have him evaluated at a clinic in Omaha that is "the authority" in the area on Apraxia, the Munroe Meyer Institute, and have an appointment for October 29th. We also have an appointment for January 2nd for him to be evaluated by a Pediatric Neurologist to make sure there are no other underlying causes of the regression.

So, where this all leaves us today is with a few major changes. First, there is hope that Levi will learn to speak (in general Apraxic kids are able to do this), but it takes hours and months and years of therapy. Lots and lots of therapy. So the first major change is that we will be turning things up a few notches with him, doing therapy three to four times a week with even more supplemental practice added in daily with Brian and I. Whether he is diagnosed officially with Apraxia or not, the therapists all agree that he needs more treatment than he's getting now.

The second major change is a perspective shift. Levi has lots to say, this has always been clear, but now we know that the reason he isn't communicating it clearly is because he can't. How frustrating for him! The huge change in perspective is just the understanding that this will most likely be the case for quite a long time. And as he gets older, with friends, in public, at church, etc. it will only get more frustrating for him as the gap gets larger between him and other kids his age. We are going to need to find new strategies and ways for him to get what he wants to say across, and thankfully with the help of technology and sign language, we can begin to walk down that road. The center in Omaha where he is going to be evaluated specializes in helping in these areas.

The third change, while not so major, is that I would like to blog a bit through this process for few reasons. First of all, there are many out there who love and care for Levi and this will be an easier way to update all without having to repeat everything umpteen times. I also want to blog about this so that I have a record of how things are progressing and improving for him. I hope to put video on here, as I already wish I had video of the words he used to say before he regressed. But third, I would like to blog about it so that others who are perhaps in the same situation will have more information and bearings for this speech journey. There is so little out there on Apraxia and the little information that is out there is rather bleak in nature, so if we can help anyone else as we go down this unclear road, that we are eager to do that.

So, in the mean time, if you think about it would you pray for Levi and our family?  Pray that we can know the correct path to take to get Levi the help he needs, that there is nothing else that is going on neurologically to be concerned about, and also for patience as we are anxious to get Levi the help that he needs as soon as possible. With Apraxia, the earlier the treatment, the greater and faster the success and I am an impatient person in general. Add in the fact that this involves the health and well being of one of my kids and two seconds seems like to long of a wait.

I plan on updating after his appointment on October 29th and perhaps do a video in the meantime to log of where we are now. And to show off his cuteness. :) Thank you for praying!