A diagnosis! FINALLY

   Well, today was Erik's first appointment with the OT and PT.  He was his usual charming, loud self.  Proclaiming when they approached his feet "No thank you! and Almost done?" When the physical therapist was done manipulating his feet he looked up at him and said "I need my stroller, I go back home now".  The PT - whose name was Tom (and who Erik called Uncle Tom - he does have an Uncle Tom, whom he really likes), gave him a mat and some toys and Erik showed all his crawling and standing skills.
After an hour of tests and observations we finally have a diagnosis...and here, off his medical charts it is. Mild or benign hypotonia.
Mild or benign hypotonia is often diagnosed by physical and occupational therapists through a series of exercises designed to assess developmental progress, or observation of physical interactions. Since a hypotonic child has difficulty deciphering his spatial location, he may have some recognizable coping mechanisms, such as locking the knees while attempting to walk. A common sign of low-tone infants is a tendency to observe the physical activity of those around them for a long time before attempting to imitate, due to frustration over early failures. Developmental delay can indicate hypotonia.

After talking with him for another hour this is basically a very mild form of floppy baby syndrome.  Usually pretty common with Down's Syndrome children.  There is no cure, there is no treatment except to allow him to progress at his own rate in really really supportive shoes which will train him to put his feet flat.

     He said this was not a cognitive delay, nor a nervous system delay like muscular dystrophy or CP - but rather a muscle sensation delay. 
    So all those early signs when he wouldn't put his legs down as a baby and would never put weight on his legs were the very first indicators of this.  Because most babies start putting weight on their legs, almost immediately they have all those months to build up the muscles in their thighs and especially their hips which down the road help them to walk.  Because Erik refused to put any weight on his legs until he was almost 14 months old, he's 14 months behind in building the muscles he needs to eventually walk.
      This made a lot of sense to me, he has to build the foundation muscles before the walking muscles can even do their job, babies need to stand up on parents laps for 6 months before they even have the capability to push up and crawl, no wonder he didn't crawl until he was 16 months old!
     Tom the PT said he sees children with mild cases like this all the time, and they eventually catch up - although sometimes it takes a LONG time, and we can't push them or they will skip steps (in building muscle) and be weaker later on.  It totally reminds me of the parents I see in my preschool who want me to push their child into academics and writing before they've mastered the skill of playing and interacting with others.  Playing helps them build the foundation that everything else stands up on. With play you learn to problem solve, you can't figure out your math homework if you don't have the problem solving skills.  I spend my days defending play and begging parents not to push their children into academics and organized sports before they've worked out the groundwork to build those things on.  This is the same, only physically.  We can't force him to walk if the hips muscles aren't developed enough.  They only develop by allowing him to cruise up and down the furniture over and over until his legs tell him they are ready to take a step.
       He also informed me that he would do fine playing sports for fun as a teenager but would likely never be a star athlete.  However after an hour with him answering questions with questions i.e Tom: Erik can you stand up please? Erik: Or crawl? Or sit? Or Dance?.  Tom: Erik I need to look at your ankles please. Erik: Or a book, or my Mommy or check your e-mail?  He thought a career as a lawyer or politician would be right up Erik's ally.  When he asked Erik what he liked to do Erik responded "Play the plinano wif Mommy". 
     Tom thought that was interesting since gross motor benign hypotonia really only has large motor delays - most of these children are excellent with their fine motor skills.  It's true Erik's drawings are already representational and he loves to play the "plinano" and eat rice one small grain at a time (or flick it one grain at a time through the dinging room).
     So, this we can handle - he won't crawl to college, we may have to modify preschool a bit as he will likely crawl in there, but he will be fine with time.
     The hardest part for me is not shaving months off his age at the playground (which I am ashamed to say I almost always do), so I don't have to endure the questions and judgment of the others "2 years old and not walking??  "Wow he talks so well, I wonder whats wrong with his legs?"   Seriously it's so much easier to say he's 14 months old. He's a HUGE 14 month old, but his Momma's a big girl so it tends to be more believable.