Life with Michael

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 his forehead is no longer purple?  I have a feeling he is going to need stitches bef

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 that she wouldn't be any fun.   So what do black b

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 the leg until move out of his way?  Yes, he doesn't hurt you but hits yo

   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 t

So I finally get the letter from the Children's Hospital on Michael's diagnosis and explanation.   Like how long ago has it been now?  You don't think I may have found out maybe a bit about what we are dealing with?  Anyway....  I told this Councilor, after she called me the first time with his diagnosis and kept rattling things off when I was in a state of shock, that maybe it all shouldn't be all doom and gloom.  I mean, my child swallowed just fine after those first months of life.  He never needed a respirator.  I don't think you SHOULD have told me on the phone he was going to have significant cognitive issues and all this other stuff and then asked me if I had any questions before you left on vacation!   Yes, I had a gentle and nice conversation with her when we met again on how I felt about how this all went down.  And I do mean I was nice.  I wanted her to possibly understand why I felt the way I did and maybe with the next parent she might think the whole

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 need to drain in before he does.  Ha

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.  After Aquarium, drove to Mission Viejo to

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 the rest o

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 usually sign for communication first, as speech is very delayed and