The Good, the Bad, and the Forming of a Plan

What do you want first? The good news or the bad news?  We will start with the good.

Levi, holding his sucker, waiting to see Paul,
and feeling like he's big stuff.

The Good
Praise God we were able to go to Levi's appointment today with the Speech Pathologist at UNMC! I kept waiting for the phone to ring saying that they needed to cancel (because I'm paranoid), but it happened! So thanks for praying. Overall the appointment went well, I think. The Speech Therapist, Paul, was super friendly and he and Levi hit it off. At one point he had Levi rolling in laughter while playing with the bubbles. He also definitely has great skill in getting Levi to make new sounds. He would get Levi to do a series of 10-20 attempts at a sound by not letting Levi do an activity until he made the sound. They were building a puzzle truck toy and for each piece, Levi had to make the /ou/ sound, the closest thing Levi could attempt at this point to say "out".  It took a lot of concentrating and studying Paul's face, but Levi was able to say it!  He did the same thing with "my".  It took some work, but Levi was able to say it!  I was getting choked up in there hearing these new sounds out of my sweet boy's mouth.

The Bad
Paul's assessment of Levi was a bit hard to hear. First, he feels that Apraxia is something that really can't technically be diagnosed until a child is 7-8 years old. For you to know that the delay is truly not caused by anything else, you can't be sure until other causes are ruled out, which is a matter of age and time. So, while Levi may have delays consistent with Apraxia, he would not diagnose it. Second, in his estimation, Levi has motor planning issues. (In my reading, many see that as the same as Apraxia, but apparently there is a difference somewhere.) He noted that as Levi was making the /ou/ sound and saying "my", he could say it once and then not remember how to do the next time. He also could say ba ba ba ba, but to only say one ba was difficult. That rang as a motor planning problem to him. He also noted that Levi perhaps appeared to have "Limb Apraxia" or motor planning issues with his hands, arms and legs as well, which is something I had suspected, but was still disappointed to hear. Signing is difficult for him, he still cannot point to facial features correctly, and he even as an infant until now, there has been some evidence to motor planning issues in a few areas. Third, he was concerned about the regression as well. Usually it is Autism in his experience, but he was leaning towards not thinking Levi was Autistic. That would be hard to call in the short time they were together and Levi's other therapists and pediatrician are adamant that isn't the cause. I agree that that is not the case. That being said, the cause of the regression could be something "scary" in his words, or a mystery we will never understand. He thought we were taking wise steps to seek a neurologist.

The Plan
Where on earth do we go from here? Good question. I have no idea, but here's the current plan...  For starters, Paul is going to see Levi twice a week for 30 minutes at a time. I am very excited about this as he made the most progress we have seen thus far. The downer is that it is on Mondays and Fridays, about a 30 minute drive away, and Abby has preschool Tuesdays and Thursdays. So, I will be using lots of gas and free mornings. Overall, a small price to pay to get Levi what he needs. And the clinic is free, which is amazing! Here's a link to it if you're interested. We are also going to continue seeing the speech therapist through Early Intervention. I am going to see if I can meet with her twice a week for shorter times instead, but I'm not sure if that will work. The more frequent, brief sessions, the better. We are also going to look into seeing if Early Intervention will have him evaluated for physical therapy and any global motor planning problems they could assist with.  Finally, we are going to figure out a system to get him to communicate in a new way. Paul thought that pictures that he could point to or special Ipad apps would be very helpful for him. He needs to see that he can "control his world" in Paul's words and starting to point at pictures of what he wants will get him to open that communication door, we hope.

So, overwhelming. Never in a million years did I ever think this is where things would be now just a year ago, but God knew!  Although he may have challenges we didn't foresee, Levi is still a sweet, funny, cuddly guy that we love so much it makes our heart hurt. And I wouldn't have him any other way.

 I will end with a funny note. As the session was coming to an end and Levi had gotten used to having to mimic all of the sounds coming out of Paul's mouth, Paul was looking at his schedule and blew out of his mouth an "I'm overwhelmed at how busy I am" kind of sound and Levi, playing with his trains on the table, immediately blew and made the same kind of sound. We all got a kick out of that. He also would scrunch up his nose sometimes trying to make the /ou/ sound, and Paul said "oh, sorry... did I scrunch my nose on you?" Monkey see, monkey do.