Progress and future

Michael is walking. Oh boy....... turn your back and he would be out the door!  Locks on everything and you better make sure you locked it after you came through.  

 We had our Shriner's visit and no braces..  Just hope that with the thera togs he now has and  growing, everything will move into place.  The ortho doc said he would need surgery later, a bone fusion.  Hoping that we can correct ourselves.  So far we have managed to get him where he is no braces so lets see where we go from here as well.  

Michael started his Toddler classes on Tuesdays.  He enjoys the other children..  No longer screams around other children, actually wanting to play.  Enjoys the park as well.  A lot of changes.  He walks up to kids now and watches.  He tries to be Mr. Social.  

 Steve is home now.  Yes, it is a help.  Michael still demands a lot of my attention when I am trying to work,  but Steve occupies him when I have to get on a call or am trying to concentrate.

We are back from Utah and the Congenital Myotonic Muscular Dystrophy Study.  I am so extremely glad we were able to participate.  One of the goals of study is to evaluate these kids and find out about where they plateau.  This information and all gathered will be used for clinical trials when the medication is ready that hopefully will reverse symptoms and allow them to live more normally and without the fear of the future.  There are so many unknowns, but the hope is that they will have cognitive recovery and the adult onset symptoms will be a thing of the past.  I don't want to imagine life without Michael and I want him to be able to achieve all his goals.  

Have seen Michael's mother a couple times now.  Finally got through to her that she needs medical follow-up herself and find out how affected she is or may be.  I tried telling her family and they all had the Not my problem attitude.  I just don't understand.  I really stressed the need this last time and she called her doctor the next day and told him what I had said to her.  He scheduled her for  an EKG  and it came back abnormal.  Hopefully she will start getting the care she needs , instead of her and her family being in denial of anything being wrong which has included Michael.