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I've been thinking about this post for a while.  I know I needed to do it, but sometimes just putting things into words can be painful.

Russell was "phased out" of the Infant Toddler Program because he turned 3 last Saturday.  As part of that "phasing", they did some "exit testing" to see where he's at now.  We got Russell's test results last week.  The numbers are that he is below the 5th percentile in gross motor skills and the 3rd percentile in his fine motor skills.  Fine motor skills are things he does with his hands and fingers (coloring, eating, picking up objects, etc.), and gross motor skills are movements with bigger muscle groups, like walking, jumping, going up and down stairs, kicking a ball, etc.  This is a concern also because he has been in PT for a year and a half now and we have been working on these very things.  He is more behind now than when we started.

This feels a little like a kick to the stomach for me, because it felt like we were on the downhill side of his treatment.  We made it up and over the hill of casting and all that entailed, and even though I knew about the muscle weakness, I really didn't think it was a big deal.   His back is STRAIGHT, is what I kept thinking, nothing else could be that bad to deal with.  I just figured we'd get through this testing, and maybe it would show something, but probably not, and then we'd move on.  I didn't really think about it too much.  But now I am.  Even though he's the same little boy he was before I knew those numbers, it feels like so much has changed.  It has kinda freaked me out.  These things can make me feel like I'm sinking into a pit because I'm so sad about them. But I've been praying about this and I think he's going to be okay.  I think about his future, and it just really feels like he will be able to do stuff like running, being active, playing, going to school.  This gives so much hope which is such a blessing for his future.

We're pretty frustrated with the neurology department at Shriner's hospital.  We've had severe lack of communication from them, they've "lost" Russell twice now, rescheduled without telling us, and we haven't actually "seen" the neurologist in 11 months.  They did videos of Russell in their Gait Lab, watching him do activities and walking, etc. back in August.  Not one person there has watched the videos, including the neurologist, still.  So we're going to try seeing some different neurologists, one down at PCMC and one here in IF, and get some new opinions.  Our pediatrician did some blood work on Russell today, and she's recommending genetic testing to the neurologist we're going to see.  It would really help to know what we're dealing with.  Who knows if we'll be able to figure it out (there are too many different types of myopathies to test for them all), but that seems like a good place to start.

Other than that, we're just going to continue with the pool therapy, physical therapy, and the tests already scheduled at Shriner's in couple of weeks.  I know Russell is in his Heavenly Father's hands, and I need to trust in that.  I need to let go of what I had pictured for him and trust that Heavenly Father's plan is so perfect it will be better than what I thought.  I don't know if I said that right, if it conveys exactly what I feel, but I know that this is the way Russell's life is supposed to go.  This is what needs to happen for him.  And for our family.  He is so young, he won't remember most of this stuff, but the rest of us will.  All of this affects the rest of us.  His siblings all worry about him.  They are protective of him and so proud of him when we're out with other people.  He's a pretty lucky boy.

MRI results and new brace coming!

We finally heard back from Shriner's about Russell's MRI, and everything looks normal.  Yea! Not really a surprise, but really good to hear.  We can all breath a sigh of relief now.

Also, Russell's brace is getting too small for him, so we are getting new x-rays and two new braces for him.  One will be like the one he has now, just bigger, and then another one that he will wear at night.  It's a brace that will stretch his back and spine in the opposite direction as the curve.  Sounds painful to me, so I'm expecting some rough nights at first with this.  I'm glad they're doing this for him.  During physical therapy, we've notice that he's extremely flexible in the same direction as his curve, but is very stiff leaning the opposite way.  We're getting fitted for these two braces on Nov. 5.  On that same day they are going to do a muscle biopsy and a lumbar puncture (spinal tap).  This is just continued testing on his muscles.