Life with Michael

What a year!      This has been a year of changes for both Michael and our family as a whole. So much has happened.         Michael started 2 days at Head Start with typical children and does 2 days at the Education Learning Center as well.  He is doing great at both.  More interactions, more engagement, and more songs :)   He shows off reading where his peers are not.  Glad he has a strength to share.  He LOVES riding the bus.  He wants to ride the bus everyday.  He wants to take his cat too.  No Michael, cats are not allowed.        We made the trek to Washington DC to meet representatives and participate in a Congressional hearing on Myotonic Dystrophy. Continue to fight for funding for a cure.  We left Miles behind to attend the MDF Gala.  Michael enjoyed himself but was the only Little Little one in attendance.        We have wonderful friends, Sarah Ruane and her son Josh that live in England.  Josh is also in the same Congenital Myotonic Dystrophy Study Michael partici

Been a busy couple months.  Michael has been to 3 states.  Glad he flies well!   We finished the current Utah study Michael was in and are now prepared to begin the next.  Working in the hotel between study days was interesting.  I pretty much had to make sure I took the boy out and walk and walk and walk him so he would be semi quiet as I tried to work.  A hahahahaha.    Hotel after long walk The new study frequency will be more often. When the drug comes available visits even more frequent still.  SLC may be in our future for living or at least part time.  We will return in October.  Will be meeting up with Sarah and Josh again.   Michael got to go to Denver on my work trip with my co-worker as his nanny.  She worked from hotel with Michael and I went to meetings and then we met up and enjoyed walking Denver.  I really like Denver.  Everything is easy access.  One of the few cities I could see living in.  Not that we are going to!   Michael will be starting Head Start in Se

This last Fall, Michael and I went to Utah to stay with 3 other families that have children in the Congenital Myotonic Dystrophy study.  One family came from Idaho and the other two from UK.  We all had boys.  It was eye opening seeing the differences and similarities in our boys. It was super enjoyable to spend the time with the other families.  Dr Johnson, Missy and Becky from the Utah University Study team came to the house for a visit as well.  Sarah, one of the Mums, neglected to tell us that the news team was coming too.  We had just returned from running the boys in the park when there was a knock at the door.  "Hi Dr Johnson, Missy and Becky.  And you are?"  Man introduces himself, channel 5 news.   Ah, well really?  Warning would have been nice.  "Oh, we told Sarah yesterday!" The next day we met up with the Contes at the Zoo.  Their  daughter Kate also has Myotonic Dystrophy and was in town for the study.  I warned Elizabeth about the news team.  She laug