Part Three

Meanwhile, back in Levi's world, we were getting him started in therapy. Occupational therapy is what we started with. We went to Mary Greeley. We had two awesome therapists there, first Jen, then Camilla.  Camilla was awesome. She was from, Hong Kong, maybe? I don't know for sure, but she had a very...how you say...thick accent. Now, at this time, Levi is only just beginning to attempt to actually communicate properly with words. We had to start very small...like I would take a light up toy he loved and I would turn it on. He'd watch it, get excited, and then I would turn it off. Then, with some prompting, he would say, 'on'. Now, this may not have exactly been the perfect scenario...having Camilla with her...strong accent, and Levi trying to learn to talk. But let me tell you. It was damn funny. Pretty soon, Levi developed a perfect Hong Kong accent when he worked with Camilla. He knew where the toy cupboard was, and so he would walk over and stand in front of it. Camilla would say, "oooohhh Leeevi...what you want?? Shoo I opa dooah?" (open door). So Levi would say, "oopa dooah!" One day she was reading a book to him about animals. She turned the page and said, "oooohhh Leeeeevi, what is dat? Is that a furree karara beyah?" (furry Koala bear) So Levi, "furree karara beyah!!" After therapy, I would take Levi to Target, and he would pick out a little something. It kind of got to be our thing. Nothing much, something small, but it was something we did that he loved. Camilla used to say, "ohhhh Leeevi, are you going to Taaaahget??" So, Levi called it "Taaaaahget." One night, we pulled in and he looked at the big red letters, and said, "Taaaahget...tarr...TARGET" like he JUST THEN realized it had an R in it because he read it! It was so funny! At the end of every session, she would have Levi make himself a "peeenud buttah jello" sandwich. After two wonderful years with her, she moved, and we had to find a new place for therapy. Child Serve has been wonderful. He has had occupational therapy, speech therapy and food group. Now he does group occupational therapy and he does very well. He has his times where things don't go so well, but hey, who doesn't have a bad day once in awhile? There is something about Levi that has always drawn people to him, which is funny because he would prefer to just be left the hell alone. His therapists and teachers have all loved him...and that has been such a huge blessing. See how those blessings keep sneaking in there?

Back to Ben. Dr. Ferguson and Dr. Suh had been corresponding back and forth about all of Ben's issues. Then, Dr. Suh made a discovery. There was a connection between what was going on with Ben's eyes, and what was going on with his joints. It was called "Stickler's Syndrome". Ever heard of it? Yeah, me either. Stickler's Syndrome is a genetic disease that affects all of the connective tissues in your body. Joints, eyes, heart, etc. It affects one in ten thousand. Yeah, that seemed about right! The most prominent symptom of  Stickler's Syndrome is a cleft palate, and he did not have that, but there were also other facial features that were consistent with the diagnosis. They are not obvious, just characteristics. (because quite frankly, I think he has a cute little face.) SO, there we were. Stickler's Syndrome really is just a 'treat-the-symptom' type deal. JRA is a symptom. So are the eye problems. Other problems could be hearing loss, mitral valve prolapse, and numerous joint issues. I know there's more, but that's all I'm gonna say. Now, because JT had the same type eye issues, they decided to check him out a little further. He also has Stickler's Syndrome. Fortunately for him, the only symptom he has at this time is the eye problems. However, at any time others could emerge, so we have that to look forward to. (ugh). They claim that Stickler's is genetic. So, in a nutshell, my genes and  John's genes (I love this word) 'mutated' to give us two kids with Sticklers. I'm pretty proud. Well, maybe not proud, but 2 in 20,000?? I'm at LEAST special!!!

So, now, since we had two kids with Sticklers and one with Autism, the genetics doctors wanted to get involved. We went, twice. We could go through a series of tests that weren't covered by insurance and were only 70% accurate to see how this all happened, but in the end, I realized I didn't care how this all happened. I just wanted to know where to go from here and what the chances were of the boys passing it on to their children. The odds are pretty high. Also, the genetics doctor, in his report, referred to Levi as 'mentally retarded'. So, I was pretty much done with those people. Grr.

And there we were, my little mutant family...

(end part 3)