Life with Michael

A lot sure has happened the last couple months.  I am really unsure where to start.   1. We have new AFOs that Michael actually loves.  More about that in a bit. 2. Shriner's clinic visit... May be our last.  3. He has decided to actually talk.  His signing is huge and is still primary but he has decided to add words to some signs and replaced the Sign 'All Done" with just words now.   4. He is graduating from the Early Intervention program to preschool. 5. He is 40 inches and 39 lbs.  (Steve just had his tendon repair and rotator cuff surgery)   1. Braces.  Micheal pronates terribly and my concern was the wear on hips and knee later.  We had tried braces previously with no success.  Our friend Sarah in the UK recommended silicon AFOs and we found someone that made them near us.  Went in for eval with John who could make them and he said.. "Nope, not what Michael needs.  I have a plan that is kind of an experiment but can we use Michael?"  They paid for AF

This month we attended the Myotonic Dystrophy Foundation Annual Conference in Washington DC.  We took our Representative Michael with us.  He was the youngest to visit the Capitol as advocate during this trip.  He was his charming self and very well behaved.   Michael is well behaved and it is very nice to travel with him.  We always get a lot of compliments.  I have always said, My kids can be bears at home as long as they behave in public and Michael was an Angel and left the high pitch screech pretty much at home.  THANK YOU!   They have started Phase 2 clinical trials on a drug that we are hoping will help Michael in the future.  It has to go through full adult testing before would be tried on children.  Hoping for a successful future.   We basically ran through DC, seeing bits of everything.  I LOVE this city!  I don't say that about most any city but I really did like DC.  I haven't been anywhere in a long time where I could sit on a park bench and in 5 minutes, hea

What changes a month brings.  Michael became an international traveler, visiting his first country of the many he will go to.  Started closer to home with Mexico.  Michael is an excellent traveler.  No issues on the plane and mostly slept or played with his tablet.   First thing getting to resort was baby proof the room!  We were rearranging furniture all over.  Coffee table and couch in front of back sliding door that led to pool.  Big suitcase blocking front door so could not be opened.  We were constantly trying to keep him out of things and safe.  Typical toddler, testing every exit, wanting to fly.    Michael still was not enthralled with the beach.  He would walk in the sand no problem, but wasn't real hip on just sitting and playing.  He will do with fine sand at a playground but the beach just didn't do it for him.  He tried to eat the sand instead, or was just trying to get it off his hands.  I am not sure which.  We stayed pretty much on one of the beds they had out

 Michael and his "What About ME?!"   Like ALWAYS.. You are talking on the phone?  "What about me?"  You are taking a shower?  "What about Me?!"  You are leaving the house?  """WHAT ABOUT ME!!!!!!!!!!!!!!!!!!!!!???? """"   Aren't you leaving someone behind?  Obviously I am not Screaming loud enough  because  the guilt hasn't forced your return!   Yes, I am talking about full blown Twos!  I know that we have a couple years of this from  experience but Michael of course just perfected the screech over night.    Ugh.  His father was a big tantrum thrower but  since Steven came between and was so calm, I briefly forgot this stage.  This too shall pass.... Thing is I like this age and the squeezies and all.  That part is probably so you don't decide to lose them somewhere when your ear drums burst...  ;0)  Michael signs and says even more.  Kind of catches you by surprise with what he knows.  I will be in bed re

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 a

Another year has come and gone.  Michael is almost 2.  He still isn't walking independently but continues to cruise holding a finger.  I continue to do therapy exercises every day to gain core strength and balance.  He can stand for 5 seconds without holding onto anything. He has NO problems eating and so far hasn't really even been sick except for sniffles so immune system fantastic.      His speech is still hard to understand though his vocabulary has increased some.  He still is a primary sign language communicator.  He has gotten very good at signing what he wants.  He signs he wants  crackers and he goes and gets them himself.  He feeds half of them to the dog.....   We went to Florida for Christmas Break.  Micheal did great on the plane.  I never flew with my other boys when they were this young.  That diaper changing thing during flight is a real challenge with a child as big as Michael.  He is larger than any changing table and covers two seats.   Poor peeps aroun