Life with Michael

From Michael: Enjoying my new house with my new BIG yard and play set.  I can go outside all by myself and mom does not need to worry.  She can see me from the kitchen and from her office depending on where she is.  I love to be outside.  My cat Pip is outside with me.  She has decided she only wants to be outside, and mom agrees since Pip has decided to untrain herself from using the litter box.  She is my friend outside and Squeak and Karma are my inside friends.    My mom has applied for a dog through CCI  to help me with picking things up if I am in my wheelchair and to just be besides me to help my balance.  The dog will also help me in the future if no medication is found to help.  Hoping it all works out because I would really love one.  I am very into dogs.    My ABA therapy has been very successful.  I am talking a lot more now.  I ask for things and can usually tell you what I want to do.  I am kind of selective still though with who I will converse with. Recently I told

June brought the end of school.  Michael had a VERY successful year!  While he may not be typical, he did very well with typical children and made friends and socialized wonderfully.  Academically he is beyond what most of the other little kids were but physically and cognitively he is still behind.  We did get some great news though.  There is another drug going into Phase 3 clinical trials for CDM and cognitive issues.  We will be participating in the study!!!!!!!!!!!!!!!!!!!!!!  Michael will be in  Utah, so will end his current study prior to beginning the new study.  Already scheduled.  We again will be meeting Sarah and Josh who are flying in from England and hopefully Deanise and family will join us for the weekend.  We will have the boys together again.   Michael has a visit with his sister and brother prior to having to go get surgery.  One last run around with Ruffle Butt.  Michael  had surgery again on his Achilles.  Is in double casts.   He has to have them on for a mont

     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 a