For Shawn's Dad

Thanks to facebook, Shawn is about to reconnect with his biological dad and his wife.
We are all so excited for them to meet.
His dad is wanting to know about his disease so I am dedicating this posting to him.
Shawn has congential myotonic muscular dystrophy. Congenital meaning that his symptoms showed up at birth otherwise your symptoms can show up at pretty much any age and you don't even know you have this disease.

Dispite being born 4 weeks early, he just a have a few minor issuse that left him in ICU for 4 weeks before coming home.
So far he is pretty healthy.

He does suffer from chronic constipation which i have to make sure he takes Miralax everyday and I am also experimenting with prunes, aloe vera, daily enema cleansers ect.. but nothing seems to help much. He does have his good days and has bowel movement and someday we will struggle for a few days till I have to intervein with an enema.
He isn't potty trained yet. Don't know if he ever will be. It is just one of those things that we just have to wait and see.

He does have some weakness in his throat muscle so I have to be careful that he takes small bites of food. He asperates on liquids and will cough and cough cause the liquid goes into his lungs. This makes him high risk for asperation pnemonia which he did have just this past summer. We caught it really early so that was lucky,

His overall muscles are weak. He can't run or jump. He goes to phyical theraphy once a week
He is also developmentally behind and goes to occupational therapy once a week. He cant talk but knows about 20 sign language. His can understand everything I tell him and is smart is certain areas.
They say he has aspergers like you and andrea but the muscular dystrophy has the same symptoms as aspergers so that is really up in the air.

He doesn't know how to play but he loves his books. He isn't much for interacting with others but he is getting better at that. I would say about 30% of the day, he will want to interact us. I really have to push him to do things other then watch tv all. He loves going to preschool.

What does the future hold for him with MD?
He will comtinue to get stronger until his early teens then the symptoms of MD will start showing up and progressing.

The heart and lungs are the 2 biggest issues. With the heart, MD will attack the electrical system of the heart. When/ if the time comes, he could possibly need a pacemaker or difubulator. He does have his heart monitored once a year and so far everything is great.
With the lungs, the muscles will get weakened and when/if that happens then he will go on oxygen.

Pain will definately be an issue. I think this is the worst of the symptoms along with chronic fatique. He does get tired easy but loves to get up bright and early in the morning..6am.

He has sensory issues that are getting better. When noises bother him or if he gets over welmed, he will plug his ears and cry.

His lower leg muscles are twisting so in the future with this starts to interfer with his walking then he will have surgery. The will fracture the bone and put pins in then put him in walking casts so he will still be able to walk

His muscles will gradually get weaker and he also has some trouble with his hands locking up when he grips things like door knobs. It takes his hands a little longer to relax and open back up
Life expectancy? I hate thinking about this and just take one day at a time. this is really up in the air also...as it is different for everyone. 20's, 30's, 40's?
He is one happy toddler and is very good natured.

3 yrs and 9 months

Guess it is time for an update on shawn. I was going to wait till his 4th bday but decided not to. He is 39 lbs and 42" tall. Yes, on really tall boy, as tall as a 5 yr old. One of his biggest hurdles, that is no long a major issue much anymore, is his younger cousin Sydney. He really had a hard time around her. Well, not really her but her cries. With his sensory issues, cries from kids bothered his ears. Everytime we went to visit sydney, he would start crying as soon as we pulled up in front of her house. Now he just walks right in and either wants tv on or heads straight to her room to take off all the books on her book shelf. All 40 books!!! haha

I bet you can guess what his favoite toy is? BOOKS !!!! He love to point at pictures in his books then wait till we tell him what it is. When he goes to therapy, the first thing he does is grab a magazine then when his therapist comes to get him, he will push her away cause he isn't done with his magazine yet. haha..it is really cute. I try to get there a little early so he can read his magazine.

Tidbits about shawn: This is his 2nd year of preschool. His first year only lasted 6 weeks then it was summer vacation. Last year he went to preschool 2 days a week and this year he goes 5 days a weeks from 8:30-11:45am. What a nice little break for me :) His teacher said he is really showing lots of improvements this year. He is just starting to match cards and finally learned his face parts. When I pick him up, they are alway sitting on the floor while his teacher reads a giant book and plays a singing cd with it. Shawn sits right up front by the teacher and flaps his arms and squeels. He loves book time.

Potty trained? Nope not yet.. constipations is getting worse and the Miralax isn't working as well as it use to. Yes i give him higher doses but with higher doses, you need a higher fluid intake or it just doesn't work. Right now we are experimenting with 100% Aloe Vera, more fiber and pureed prunes in yogert is his favorite. I also discovered cleansing enemas that are safe to use daily



He is really taking off with his sign language. He know about 20ish signs. He learns them very quickly but will only do them occationally.
mama,grandpa,grandma,bath,hat,shoes,eat,milk,thirsy,banana,hot,cat,dog,outside,sleep,brush teeth,candy,icecream,go bye bye,

Muscular dystrophy Lockup

Summer of 2011
Shawn is bailing out his therapists at the MD lockup. This was our first year that we went and met a few kids with MD.

Shawn meet his first MD friend at the Muscular Dystrophy Lockup at the Montana Steakhouse and guess what his first reaction was to him? Hugs Hugs and more Hugs.

Milestones at 21 months

He is still pretty far behind but that is ok.
He is finally staying awake longer. Up at 7:30 am....naptime at noon and he will sleep till 2-3pm then bedtime between 7:30-8pm.

He has developed some sensory issues. He hate swinging motions and loud noised. When he hears another baby cry, he starts freaking out and crying and will cover his ears. Certain commercials will scare him and he will fall flat on the floor and cry.
I ordered a sensory brush. His OT says that his nerves aren't sending the right signals to the brain so stimulating the nerves with a brush will help.

I ordered him the Signing Time DVD. I don't know where he will be at speech wise so I am pushing the sign language on him. He can understand, to some extent:
eat, milk,juice,bath,mama,grandpa,play,all done, more. He can only sign the word...eat...so far.

He still doesn't know his name when we call to him.
The other day I seen him standing and he let go. yeah he was standing on his own for a few minutes. He is getting brave.
He is finally learning that walking is fun. He is walking around stuff a lot more.
He has been very healthy.

October 2009

He is now 21 months old.............
Well, we gave the walker a chance for a couple weeks. His phyical therapist let us borrow it. He isn't a big fan of it so we returned it and will try again later.

He loves to look out the back door and the only way he could get to it was getting up in the walker. haha I had to get clever.
He hated that thing.



Since this picture was taken ,about 4 weeks ago, He has greatly improved on his walking skills this past week. He walks along the walls, around the table, around the couch and he will even walk when I hold just one hand. Yes, he is very wabble walking with holding only one of my hands but at least he won't sit down on me anymore.


He is walking up the stairs holding onto the railing. I have to give him a little help cause he just doesn't have the leg strengh yet. He also is learning to walk down the stairs. He tries but needs lots of help.





Fun Run 2009








What a fun day we had. This was an event for the special needs kids. We entered Shawn in the 3/4 mile run. He is ready to go. I bet he would of crawled the whole way if I would of let him.

Shawn and me aka grandma










On your Marks...Get Set....Go Shawn Go


When we crossed the finish line, everyone got a prize. He got a big ball

Of course we put him in a stroller. He sat back and enjoyed the ride.

Here he is with his mom and her boyfriend. Since mom has MD she didn't walk the whole way with us. She took a shortcut.

walking furniture

Look at that cute haircut. His grandpa took him to the barber. No more baby hair and curls. He is 18 months old now. He is such a big boy. He is in the 95 percentile for his height and head. 50% for weight.
He has learned a few new things these past couple months. His biggest accomplishment is crawling up the stairs. All the way to the top, about 15 steps. I had to buy another gate. Don't know how I am going to keep him off the fireplace.
He is getting brave and trying to go from one piece of furiture to another. He can also walk furniture. Oh yeah, and if you have the foot rest up on the recliner, he can climb up onto the couch.
He is using his thumb and index finger now to grasp food and put it into his mouth.
He is understanding a few sign languages....mama, more and eat, One day I seen him do the More sign after I did it.
He still isn't really talking yet. Once in a while I hear him say dada and that is it.
ahhhh, hear that? Quiet....
it is 8:30pm and he went to bed at 7:15pm. He is starting to take just one nap here and there.
It is nice.
He had an ultrasound done on his heart. His small hole is still there but the doctors aren't concerned

starting to crawl

April 25th,2009
16 months old
He finally took a few crawling moves and fell flat on his tummy.
What an exciting milestone to finally reach. One week later and he is cralwing about 4 feet now. He is also going from his tummy to a sitting position. I always have my back to him when he does this but I finally go to witness it and within a week he can get into the sitting position with no problem.
Shawn was sitting in his crib playing while I was putting up a closet organizer in his closet and turned around and he was standing !!! That was on April 13.
He has only pulled himself up to a stand just a couple time using the couch but he can do it everytime from his crib. It is great to see him getting stronger and those muscles building.
He can comb his hair. Well he tries anyways.
He has 4 teeth on top and 4 on bottom and he is getting molar coming in.They haven't popped through the gums yet.
Haha I am laughing at my son. I got him an Einstein video today and he is so engrossed in it and laughing.
He is also learning what the buttons on his toys do. Push the button and it plays music. Put the ball in the top and it comes out the bottom but you have to open the door to get the ball out.
He still only says DaDa but only a few times a week and MaMa once in a great while.

He had a speech evaluation done this past week and in the 2 areas they tested him in,
Auditory Comprehension-10 mo old
Expression-8 mo old

He will start speech therapy but since he goes to physical therapy once a week and occupational therapy once a week, adding speech once a week also is going to be to much for my busy scedual so I am going to alternate OT and speech every week.