Appt. with the Neurologist

We had our appointment with the pediatric neurologist last week on Wed.  It went really well. I liked her, and so did Russell, she listened, and was very thorough. We didn't get a whole lot of answers, because we need to do more testing.  They did a little more testing on his muscles (mostly testing his reflexes), and she said that he definitely has a myopathy.  They were able to rule out the worst kinds of myopathies (thank goodness!!), but we don't know anything more than that yet.  The first test he needs is called an EMG (Electromyography) Test.  We're going to do that one at Primary Children's Medical Center, probably in February.  It's a test where they will mildly sedate him, and then stick needles in his arms and legs.  She said that parents need to be prepared before hand for what they will see that day.  Uh, yea.  That gave me a good chuckle.  (Later, obviously.  I was not laughing away during the appointment.  That would have been wierd. :) ) Anyway, that should narrow down what exactly is wrong.  So not too much information, which I'm happy about because now I have time to get used to this mentally before finding out what exactly is wrong.  And we were already pretty sure there was something else going on, so it's just confirming what we were thinking.  It feels good to be doing something about it.

Pictures of 3rd cast

I wanted to post some pictures of Russell in his new orange cast.   

He's doing pretty good in this cast. He gets really tired, because he has to get used to it all over again after having it off for 6 weeks. But his arms and legs are building strength again, slowly. He's finally been able to go up and down the stairs again, and it only took him about a week to relearn how to do that this time. He's frustrated sometimes because he can't do some of the things he could do without the cast. It must be because he's older and can remember those things better now. But he's still mostly a smiley guy. Just need to skip mealtime, bedtime, and later in the day when he's tired. Those are tantrum throwing times. But it's getting better every day. I'm amazed at how quickly he's adjusting. He's a strong little boy.

This is the look he's giving when he's trying to figure out something, i.e. the camera. The toy keys he's holding, I gave to him right after he woke up from the anesthesia. He's LOVED them!

Russell's latest x-rays

I forgot to say in my last post, that we got Russell's curve down to 18* (it was 25 * in his previous cast). This is AWESOME! If you compare the two x-rays below, you can see where we are at and where we started back in March.  You can see that his ribs on the left side look so much better now (they look more like the ribs on the right in the more recent x-ray than they do in the earlier x-ray).  I am so grateful for modern medicine, Dr Jacques D'Astous, and Dr Mike Pond, and Dr. Min Mehta! I feel so blessed that Russell is doing so well!

 

Russell, 3rd cast, 24 months, 18* curve and 0* RVAD

Russell, no cast, 17 months, 45* curve and 45* RVAD