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!

Catching Up

Well, it has been a long time since I have blogged, but it has not been without reasons. First of all, I have three young kids. Get off my back. Second of all, the end of 2011 and certainly 2012 thus far have brought many, many changes. So far this year, we have sold our home, lived at my parents for 2 1/2 months in the interim, then moved into our new home. We have changed churches, leaving our former church to help plant a new church in the Gretna area. This was also the reason for our move. (More info on the church here if you're interested). We have also changed schools, which was thankfully an easy transition.  All of these changes have drastically changed life as we knew it, but all have been exciting and positive. So, it's been a busy, busy time, but also very exciting.

What hasn't changed, is Brian's job. Many people ask us, so to clarify  he is not a pastor at the new church. We are simply heavily involved in helping plant it and leading in areas as needed. Another thing that hasn't changed is that I am still doing event planning on a part time basis as I stay home with the kids. That makes for about 2 1/2 full time jobs. Levi is one person's full time job. Abby, Jonah, and Brian are another.   Finally, another thing that hasn't changed is that the kids are still amazingly cute, in case you were concerned.  As proof, here are a few pictures I have managed to take in the last year below.


Snow is so fun!

She's 4!

We went downtown for Thanksgiving just as our own little family and stayed over night for the turning on of the lights last year. It was such a fun time and treasured memory.

Cousins! We went to Ohio for Christmas and as usual, had a blast for family.

Jonah turned six and celebrated in superhero style.

Daddy-Daughter Dance

We partied hard as Levi turned two in July.

Our new backyard. Can you believe it? It's beautiful.

Brian had shoulder surgery and Abby is "doctoring" his other arm here, just to make sure he's covered.

We had a family vacation to Kansas City and Lego Land. Levi found the only type of dog he would ever have the chance of getting. :)

Doing the cake walk a Jonah's school carnival in August.

Boo!

Here are our spooks this year. We went to a Halloween event at the zoo that had a DJ and dancing (among other things), which after about a half hour we had to pull her away. Can you blame her? Cinderella had to live it up at the ball!

Then, finally, it was time to Trick or Treat

San Diego

In September, Brian and I had the chance to get away for a SIX days without the kiddos. While we did miss them, it was a wonderful chance for some distraction free marriage-building time. Thanks Papa and Mimi for taking such great care for the kiddos while we were gone. They had a blast!

Jonah's Big Day

On August 10th, our home officially moved into a new stage- school age years. Jonah, our sweet-hearted first born was anxiously up at 6 am to start this new adventure. As his mama, I was less eager for him to begin. I was sad to lose so many hours of the day with my buddy, but also excited for my super social guy to get to learn in an environment that I knew he would thrive in.

Oddly enough, one of the hardest things for me with him going was the thought of him having lunch without me. I was afraid of him not knowing how to open his own yogurt, or eat his veggies before the dessert, or not have enough time to finish his sandwich, let alone the other items (none of these have ever been a problem by the way... Apparently Jonah is capable of eating lunch without me!). In order to ease the transition for both of us, with the help of a cutter, I cut his sandwich out in the shape of the Millennium Falcon. Jonah thought it was super special and it really did make me feel better too. :) We also still send notes in his lunches, which I don't see ever stopping. Sorry, high school Jonah.

We tried not to hype things up too much and create nervousness for him, so Jonah picked out his own outfit. In retrospect, a little guidance probably wouldn't have hurt. :) Go Big Red!

Jonah's classroom. The lady standing in the back middle is his teacher, Mrs. Sweetman. She is wonderful! I'm so thankful for Jonah to have such a great teacher in his first year!

A nervous smile sitting in his seat for the first time. This was followed by me trying not to hug him for a fourth time and holding back tears. So proud of him! The boy with his head turned sitting to Jonah's left is Maddox, his best Kindergarten buddy.

After we walked home, Abby, not sure what the big deal was, was insistent on her turn for the picture. Ta da! (Note: she also dressed herself.) :)

This is Jonah just after being picked up. He loved it! He loved his first day of Kindergarten and he's loved every day since. I still miss having him around, but so far this new stage in our home has been great. Jonah is proving that he can venture a little farther out in the world and even thrive doing it.

I'll Dance with Cinderella....

A Few Months Ago....

July 14th, to be exact, my baby turned 1!

Here he is enjoying his birthday slumber.We had family come over to celebrate. He may have been a little overwhelmed by cousins.Fun and messy ice cream sandwiches. They were actually fairly easy to make.Ready to devour.

Finally, we celebrated with a splash. We love you precious boy!And in honor of turning one (exactly three months ago) Levi has now decided to officially use walking as his main mode of transportation. Video coming soon.