Life with Michael

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. ...

Michael had his Child Developmental Appointment for assessment of needs.  We walked in not knowing what was going to be suggested.  We walked out with the diagnosis of Autism Spectrum Disorder.  Ugh.  Now I knew a dual diagnosis is common with children with Congenital Myotonic Dystrophy.  We just didn't see Michael triggering enough of the bullet points for the diagnosis.  Shows how much I know.  I knew he had facial aversion until he knows you and sometimes even with us.  Yes, he has repetitive behaviors.  Spinning things.. Awesome!!!  Full body movements when excited, since birth.  Language, impaired but he has CMMD.  So what now?  100 day family kit for Autism with things to do each day.  A new Study to participate in about teaching kids with autism.  ABA therapy on top of even more speech.  :/  I am exhausted just thinking about it.  I am thinking to start it all after ...

Michael doesn't know who Superman is, but he does want to fly.  Whether it is on a swing, in our arms or in the sky on a plane, he looks to be airborne.  He stops and watches as planes fly overhead and it is one of the first words he could say clearly.  He likes to be on his belly on the swing and have Steve lift him to the air.   Unfortunately Michael is not Superman and it becomes painful when reality hits.   Michael fell recently on a trip to the coast.  He was watching the spinning color flags and turned catching his brace on a stair.  He fell forward onto a stone step with his front top teeth.  They had to be removed. OUCH Next stop Utah.  Micheal went to his annual CMD study in Salt Lake City in prep for the drug trial.  There are actually 3 drugs in the works   First visit Speech therapy evaluation.  “Hi, what is your name?”  “His name is Michael, he  doesn't  say it.”  Michael, “Michael.” ...

I have been wondering what to write in this Blog.  I keep changing my mind.  Do I keep it joyful and light and concentrate on Michael and his accomplishments which bring us smiles every day?   Do I tell what is it like raising a disabled child and moving among the systems and the tears that go with that?   I have restarted this Blog many times now as this internal debate goes on.   Screw the hard stuff and explaining, we are going to Disneyland!   Michael is 3!  Wonderful heavy 3.  Kid is huge.  We were gifted with a wheelchair by my sister's generous neighbors for Michael to grow into.  After many many months of fighting with the system, we also FINALLY got him the wheelchair he needs now that is fitted to him and US.  What a battle for that.  It didn't happen before we made our trek to Disneyland with our wonderful CMMD family.  We are very thankful it happened though!   This last week we trave...

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 b...

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...

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. ...

 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 su...

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 o...

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 ch...

Well first steps came before 2nd Birthday!  They are only 2-4 and then down he goes but he is trying.  He is constantly wanting to walk between Steve and I.  Our backs are feeling it.  Knocks him out afterwards though so you get a break to do things you need to do without tripping over him.  He can book it with his walker though.  Watch out!   He can say Eat, Go and No along with counting.  I am waiting for Now.  Oh wait, he just figured out "done".  I make him sit in his high chair until he signs it after eating (which he knows).  We had a battle of wills (he was screaming and refused to sign done when asked), I left him in his highchair. He decided it was easier to say it and get down to bug me than scream in his high chair while I did dishes.  Progress?  ;)   He has a helmet to protect his head.  He can still manage to turn in such away that the exposed area is what he hits.  At least ...

Well I have been waiting for insurance to clear our headgear for well over a month.  Michael sometimes looks beat up since he falls a lot in the process of trying to walk.  Bruised forehead, bruised lips, bloody mouth.  I mean Mayhem Michael looks sometimes like Mayhem from the All State commercials.  He cries, gets squeezies, and then wants to try again. We did get casted for custom SMO braces.  They are hinged to allow dorsiflexion on his own but will help with his  pronation and ankles.  He walks straight for a little but tires quickly and then pronates pretty bad.  Hoping these will help keep everything neutral and help those ankles. We were out getting the mail.  Nice sunny 75 warm day. Right in front of our house, an older lady tells us that Michael needs to go put his shoes on.  "It is too cold for bare feet." :/   We just ignored her.  Michael, who is usually very friendly, wasn't.    Guess he could tell t...

Introducing Mild Mayhem Michael.  We  have a child that has HIGH frustration tolerance.  He just keeps trying and trying and trying and doesn't give up.  He practices his PHYSICAL and Mental skills,  honing them in... Building strength to climb on the coffee table so he can POUND on the HD TV?  Yep, he  mastered that!   Take apart all his toys that have batteries.  Fling them all over the house and keep repeating?  Yep, he has mastered that.  He can even put them back together IF he wants. Complete now ALL the puzzles on his tablet by himself?  I didn't think that would be possible for a long time.  I guess I need to look at his uncles and realize that Michael may have some advantages :0)  Figuring out Child Safety locks....  Most of those are a joke now. He is even taking off his diaper and letting you know he needs changing...  Running anyone over with his walker or just bashing them in ...