Life with Michael

Michael kept developing fevers after swimming at the local YMCA last month.  Our neighbor with a pool has graciously allowed us to use it whenever we want.  To Steven that means everyday and Michael is in complete agreement.  Michael LOVES the water.  I have been trying to teach him to float on his back as a safety measure.  He can do it, but he keeps turning over to belly and hasn't figured out how to flip back.  When we are holding him, he tries to push out of our arms to go forward, BUT he doesn't close his mouth so ends up with water going in the wrong places.  Doesn't stop him at all.  No fear.  Now I understand why drowning is the number one accidental death in children besides MV accidents.  We shall just keep on trying and feel good about it being the neighbors pool behind a locked gate and not a body of water in our own yard.  He hasn't figured out we have a pond yet (can't get to that part of the yard crawling) and will ne...

Well Steven was right!  Long trip.  Found out Michael gets car sick.  Trip to children's hospital must be the longest he can hold on without PROJECTILE vomiting all over.  Boy were we happy to get to our first hotel!  At dinner that night, Steven and Michael were sitting at table nodding and shaking their heads at each other.  I asked what that was about.  Steven answered, "We are having a debate."  It wasn't over whether the food was good or not because it wasn't.  Anyway, Michael explored the hotel room and left his prints behind. First stop was Berkeley to see Uncle Trevor. Had a nice lunch and walk around Berkeley.  Found the Monty Python Killer Bunny puppet in a shop.  Michael LOVED him so we got it. Headed down to Monterey next day to Aquarium.  Found out Michael does not hang well in stroller around many people. We took the Same Shell Picture that I took with Steven when he was a little guy as well. ...

Tuesday we were up at Doernbecker's Children's hospital.  This time not really for Michael but for Steven my youngest son 15.  Steven has been dislocating his knees this last year fairly frequently.  His PCP referred him to make sure was not a serious connective tissue genetic issue.  All of his pre tests he passed so we knew pretty much that we were not faced with Marfan's Syndrome, though needed to confirmation. Michael's Physical Therapist, who was the first one to say "Have Michael tested for Myotonic Dystrophy." when everyone else was scratching their heads, said that she didn't think Steven had Marfan's but Ehlers-Danlos Syndrome mild form.  I think we will just go to her for now on if we suspect a genetic issue.  Yes, that is what Steven has.  It is also what most members of cirque du soleil have. It is not uncommon and usually just ignored as double jointed and flexible.   Steven has always been able to do things with his body that ...

And yes he does wear clothes.  He gets them super dirty, super quick though so usually takes a couple baths a day and doesn't want to put the clothes back on ;)

So we now have a diagnosis for Michael and a new journey begins.  Michael was just diagnosed with Myotonic Dystrophy.  His care has been transferred from Doernbeckers CH to Shriners hospital since they specialize in the Muscular Dystrophies.   He has the congenital form of Myotonic Dystrophy, which means his Mother has the condition is well but adult form.  My anger at her abandonment of him has lessened greatly after reading what symptoms she would present with.  2 of the biggest are apathy and depression.   What does this mean for us?  We know know why he has the hypotonia he has and why he does certain things or is delayed.  He was already getting OT,PT and Speech therapy before the dx so we are a step ahead in all that.  I had demanded it earlier when I realized his neuro deficit was hindering things.  Our house looks like a mini obstacle gym.  Now i will be ordering a sign language learning program because they usua...