Bumps in the Road.

    We found out recently that the drug we were hoping for to treat Michael is not going to happen. The last go just didn't produce the results they were hoping for.  They do have potential for a new delivery method to allow a much higher dose compound to get into the muscle safely but not this year.   They got a lot of good information from this study that they will move forward with. Unfortunately this news is a death sentence for some that don't have the time anymore to wait.  That is our reality when dealing with a progressive disease.  It is too much to contemplate, so I avoid it.  I just work on the goal. 

We attended a conference in January in San Diego.  There may be another drug ready as early as next year for trials.  Here is hoping.  As part of trip, Aunt Loraine and Uncle Kevin treated Michael to Lego Land for his birthday with cousin Zen.  Michael LOVED it!    

Michael returned to Utah in March for the research study.    He did fantastic!  He showed them all the skills he has been working on and how smart he is. He did a lot more this go around.  


He is doing well in school.  Socialization has really picked up.  He has friends now.  The Head Start teacher tells me everyone loves Michael.  He is with Neuro typical children two days a week at Head Start and then two days at the Special Education center where the children have a variety of different issues. He has really changed this school year.  

Michael is having troubles walking again as it hurts. He is sitting down to scoot while at home more and more.   He is scheduled for surgery in June.  He will be in full length casts for a month and then shorter casts for another month.  We had to schedule it when out of school since Michael is not capable of using the toilet yet.  Afterwards he will be back in braces.  UGH!  Michael does not do well in braces.  We are going to have to think how we are going to do playing and school.  I say night braces and when home from school and play.  

Michael absolutely loves his personal support worker Nala.  He cries when she leaves.  So glad he loves her so much.  

Started ABA therapy for his autism.  Right now they are observing us via video and lots of homework for me.  They will get serious when we move into our new place.  Serious is like ALL DAY and they go everywhere training everyone for consistency on working with Michael so he gets the same reinforcement from every person to achieve the goals and success we all want for him.  

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