Visit to beach and first trip to Shriners.

  Color Run!  Michael got to participate with us and end up looking like Zombie baby!   We were the Autonics for Autism and Myotonic Dystrophy awareness. 

First beach:  Went to Florence and took Michael's toy walker with us.  Let him cruise the boulevard   Found out Michael is an attention hog.  An older gentleman said something to him when he fell to his knees so he kept repeating the process and looking at him to get the reaction again.  It was cute.  He also found his BAD restaurant voice.  He had been so quiet up to now.  Though he wasn't nearly as bad as many toddlers I have seen, I am sure some peoples heads were turning with his demands.  Steven was MUCH worse though, that we didn't even take him out to eat when young.  

The walk on the beach to the water was fun.  Michael LOVED the ocean.  It wasn't too cold but nice.  He wasn't real thrilled with the texture of the sand.  He didn't take off and start crawling.  He did the balance on the butt thing to keep as much up from the sand as possible.  Also tip for those of you that do not know this.... Baby Powder is a must for kiddo beach trips.  You get back to the car, dust them with the powder and brush and ALL sand magically falls away.  Sand free trip home.  

Michael's home PT/ST therapy visit went well last time.  He decided he would show all his skills and just kept up a constant chatter and played and played.  Showed PT how he is walking around while holding on and how strong he is getting.  Talked about what we should ask or tell at our first Shriners visit since being diagnosed.  

 First off, what a wonderful hospital Shriners is.     We were shown to a room and then the visits began.  First Ortho, then Genetics, then Neuro, the Social Worker, the Muscular Dystophy Association contact, Medical students, and last PT/OT.  

They all come in separately.  While each has a specialty, they themselves all asked methe same questions, except the medical Students who by far asked the most exact and extensive questions.  Yea for our future doctors!  Anyway... when I would tell them I was raising Michael and his permanent guardian, all their reactions were Wow, that must be hard for you.  Really???  Really???  No, hard would be having to give him back to crappy parents.  Hard would be Not knowing if he was being cared for properly.  Being parents again is not hard.  I love it.    I am not 70 for Pete's sake with limited energy. How many parents are out there becoming parents for the first time in their 40s?  Quit a few now a days!   I already know how to do it too.  Piece of cake.  

     Michael was performing at his best that morning as well.  Walk?  Sure I can walk holding onto things for you.  Talk?  While he did about the same as he does for his speech therapist normally and that is very little,  he actually fell asleep for them.  Nice....  

I didn't have any concerns until I asked the big question of the Neurologist.... What can I expect and when will he display the adult onset symptoms....  For those that don't know, Myotonic Dystrophy has a congenital form that they are born with the issues they have and then improve to where they will be for a while.  Later in life they start the backwards fall.  Average life expectancy for a child born with CMD is 21.  It is not a pleasant process.  That is why if I have your address, I sent out the CMD postcard with Michael's picture asking for the Myotonic Dystrophy foundation to be included in your list of charities.  If you didn't get one, I can send!  They are very close to developing a cure for this disease.  It will be the first Muscular Dystrophy that has a cure.  They are getting closer and we need it before Michael reaches adulthood.  Though it sounds like we have a while, those of us that are parents know how quickly that time really goes. So after the only part of visit where I was holding back tears, then came the part that I asked about walkers.  The PT came up with 2 to try and was amazed when Michael took the one and started off down the hallway.  You could tell by his face.. "Get out of my way. I am on the move."  Everyone stood back and watched my little guy just start to cruise and manipulate that walker around.   He finally realized how many people were actually watching him and the anxiety set in.  The watery eye, lower lip quiver warning sign.  Scoop up child and walker and return to room before full meltdown.  He pulled it together real quick.  He even showed everyone how he could count from 5 to 10.  He doesn't pronounce the words all the way but you can definitely tell what he is doing.  No I don't think the actual counting concept is in place but he has memorized the pattern.  He can do 1-10 but skips 3 and four and sometimes six or seven.  Not sure how to differentiate between those two yet.  I know he says them differently but he doesn't say them together enough for me to figure it out.  Was a nice way to part company, Michael showing his Woo Hoos ;)  

Stopped and got new shoes again on way home as again the plan has changed.  They want him in soft soles when walking and back in his braces at night while sleeping.  Things just change change change as quickly as he does.