Michael Warechowski IV

Updates on our sweet Michael

Greetings from Pittsburgh!

on May 31, 2012

I’m sitting here in our hotel room here in Pittsburgh, waiting to leave for the hospital for Michael’s 12pm sedated MRI. The results of this test interest me a lot because they will be able to compare it to the MRI that was done back in February and get a more clear idea of how fast Michael is progressing.

The trip has been very good so far. Michael did so good on the plane ride up and has been very well behaved and cooperative so far. Just as everyone said, Dr. Escolar is amazing and her team is just as wonderful. We have learned so much so far and feel much better about how we are going to manage our lives over the next few years. It’s going to be tough, that’s for sure. But at least we don’t feel as alone or as blind anymore.
What we have learned about Michael so far is that his hearing is perfect. He is advanced in his language skills, especially his expressive language. He’s only about 9 months old in his motor skills. His legs are severely hyperextended – more so than most. Most children with MLD have hyperextended knees at about 5-10 degrees. Michael’s knees are hyperextended by 20 degrees. We are going to have to put him in his AFO braces a lot more to keep his legs straight. Later today, Michael will have an Auditory brainstem response test. What this test will do is tell us how his brain is interpreting the sounds he is hearing. Although his hearing is perfect (which we learned most MLD kids keep their hearing throughout their lives), what can change is his ability to process what he’s hearing. So this test will show us if he is still processing things normally.
We also met with the Neurologist here and they think Michael is having some neuropathy or nerve pain. They want to start him on Neurontin only at night to see if that will help him sleep through the night. We feel good about this decision. We gave him some last night and it didn’t seem to help – he was awake at least 4 or 5 times. They said we may need a slightly bigger dose and it may also take some time to build up in his system.
I think that is all for now. I’ll update again when I know more.
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