Life with Michael

I am back with the annual Christmas letter.  I have so much to share.  I am awesome.  I am sure everyone knows that. Mom took me on a train trip Candy Cane Express and when the guy with the white beard walked in, I said, "Hello Father Christmas."  Everyone thought that was really cute.   Do not eat cheetos or doritos you find in a pile at my house. They will be wet and soggy from having the powdered stuff sucked off.. just warning you. Mom took me to the farm and we got fresh cider and Apple Cider donuts!  YUM!!!!!!!!!!!!!!!!  My new favorite.  Mom says she glad it is a drive otherwise she would gain her weight back.   At my parent teacher conference my teacher said she adores me.   Her daughter was in my class last year. When she showed her daughter her class list before school started, Emma said, "You have Michael. Oh Mom you are so lucky, you got Michael." She said she thought it was funny for her to say un...

Michael completed his first year of school.  Had his recent IEP meeting and he is staying right where he is with all his services and 1:1 aid.  The meeting was fantastic.  His school is very supportive and adore him.  Sometimes traversing the issues that come with a child that has a medical IEP can be very difficult.  It was in Roseburg.  Such a relief that they didn't question any of his needs or supports and agreed.  Michael has discovered girls in a way.  His sister Adrianna is 16.  She has friends over a lot.  One came over named Kimberly and Michael absolutely went head over heels in "I want your attention".  He told her she was cute and beautiful and had to sit right next to her while she was here.  Other people tried to talk to him and he only had eyes for her.  It was quite comical to watch.   Michael at school recently needed a break and went into the Special Ed room to nap.  He was on the f...

From Michael: Enjoying my new house with my new BIG yard and play set.  I can go outside all by myself and mom does not need to worry.  She can see me from the kitchen and from her office depending on where she is.  I love to be outside.  My cat Pip is outside with me.  She has decided she only wants to be outside, and mom agrees since Pip has decided to untrain herself from using the litter box.  She is my friend outside and Squeak and Karma are my inside friends.    My mom has applied for a dog through CCI  to help me with picking things up if I am in my wheelchair and to just be besides me to help my balance.  The dog will also help me in the future if no medication is found to help.  Hoping it all works out because I would really love one.  I am very into dogs.    My ABA therapy has been very successful.  I am talking a lot more now.  I ask for things and can usually tell you what I want to do. ...

June brought the end of school.  Michael had a VERY successful year!  While he may not be typical, he did very well with typical children and made friends and socialized wonderfully.  Academically he is beyond what most of the other little kids were but physically and cognitively he is still behind.  We did get some great news though.  There is another drug going into Phase 3 clinical trials for CDM and cognitive issues.  We will be participating in the study!!!!!!!!!!!!!!!!!!!!!!  Michael will be in  Utah, so will end his current study prior to beginning the new study.  Already scheduled.  We again will be meeting Sarah and Josh who are flying in from England and hopefully Deanise and family will join us for the weekend.  We will have the boys together again.   Michael has a visit with his sister and brother prior to having to go get surgery.  One last run around with Ruffle Butt.  Michael  had surgery again...

     We found out recently that the drug we were hoping for to treat Michael is not going to happen. The last go just didn't produce the results they were hoping for.  They do have potential for a new delivery method to allow a much higher dose compound to get into the muscle safely but not this year.   They got a lot of good information from this study that they will move forward with. Unfortunately this news is a death sentence for some that don't have the time anymore to wait.  That is our reality when dealing with a progressive disease.  It is too much to contemplate, so I avoid it.  I just work on the goal.  We attended a conference in January in San Diego.  There may be another drug ready as early as next year for trials.  Here is hoping.  As part of trip, Aunt Loraine and Uncle Kevin treated Michael to Lego Land for his birthday with cousin Zen.  Michael LOVED it!     Michael returned to Utah in Ma...

What a year!      This has been a year of changes for both Michael and our family as a whole. So much has happened.         Michael started 2 days at Head Start with typical children and does 2 days at the Education Learning Center as well.  He is doing great at both.  More interactions, more engagement, and more songs :)   He shows off reading where his peers are not.  Glad he has a strength to share.  He LOVES riding the bus.  He wants to ride the bus everyday.  He wants to take his cat too.  No Michael, cats are not allowed.        We made the trek to Washington DC to meet representatives and participate in a Congressional hearing on Myotonic Dystrophy. Continue to fight for funding for a cure.  We left Miles behind to attend the MDF Gala.  Michael enjoyed himself but was the only Little Little one in attendance.        We have wonderful friends,...

Been a busy couple months.  Michael has been to 3 states.  Glad he flies well!   We finished the current Utah study Michael was in and are now prepared to begin the next.  Working in the hotel between study days was interesting.  I pretty much had to make sure I took the boy out and walk and walk and walk him so he would be semi quiet as I tried to work.  A hahahahaha.    Hotel after long walk The new study frequency will be more often. When the drug comes available visits even more frequent still.  SLC may be in our future for living or at least part time.  We will return in October.  Will be meeting up with Sarah and Josh again.   Michael got to go to Denver on my work trip with my co-worker as his nanny.  She worked from hotel with Michael and I went to meetings and then we met up and enjoyed walking Denver.  I really like Denver.  Everything is easy access.  One of the few cities I could see livi...

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...